PDA Advocacy

10/08/2026

My child didn’t stop wanting to learn. He stopped being able to access school.

Those are two very different things.

School is full of demands - timetables, transitions, instructions, expectations, sensory input and social pressures. For an autistic child with a Pathological Demand Avoidance (PDA) profile, navigating that demand load all day, every day can become overwhelming.

As capacity reduces, attendance can become harder and distress can increase. Yet from the outside, that can easily be interpreted as:

“They won’t go to school.”

And once won’t becomes the assumption, so much effort can go into getting a child back through the gates rather than understanding what is making that environment inaccessible.

My child is still curious. Still capable. Still interested in learning.

Learning wasn’t the barrier. The environment was.

Schools can’t remove every demand, but PDA understanding can change how children are supported. And for some children, even with adaptations, school may not be an accessible environment.

School and education are not the same thing.

For some children, education has to happen differently.

💬 Has your child ever wanted to learn but been unable to access the environment where they were expected to learn?

The petition closes 20 August.

I’m calling for National Support Standards for autistic children with a PDA profile, because understanding PDA must translate into education children can actually access.

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Day 30 of 40

A child shouldn’t lose their education because they cannot access it in the way the system expects.

09/08/2026

There is a huge difference between a child who won’t do something and a child who can’t.

The problem is, from the outside, they can look exactly the same.

A child standing at the school gate refusing to move.

A child with their head on the desk while everyone else is working.

A child saying “no” to something they managed perfectly well yesterday.

We see the behaviour.

But behaviour doesn’t tell us capacity.

And that distinction matters enormously in education.

Because the moment we decide a child won’t, we start looking for ways to make them.

More encouragement.
More expectations.
Rewards. Consequences.
Attendance targets.
Behaviour policies.
Pressure to try again.

What if a child can’t?

Can’t process another instruction because their nervous system is already overwhelmed.

Can’t tolerate an environment that feels unpredictable or unsafe.

Can’t access learning while using every bit of their capacity just to stay regulated.

Can’t do today what they managed yesterday because capacity fluctuates.

This is important for many children with SEND, and particularly when we talk about autistic children with a Pathological Demand Avoidance (PDA) profile.

A PDA child can want an education.

They can want friends.

They can want independence.

And they can still be completely unable, in that moment, to do what is being asked of them.

That’s one of the things we desperately need education policy to understand.

Being able to do something once is not evidence that a child can consistently access it.

And yet that inconsistency can so easily become:

“But they did it yesterday.”

“They manage when it’s something they want to do.”

“They could do it if they really tried.”

And eventually:

“They won’t.”

Those two words can send us down completely different paths.

If we believe a child won’t attend, we ask how to improve attendance.

If we recognise that a child can’t currently attend, we have to ask what has made education inaccessible.

If we believe a child won’t comply, we reach for behaviour strategies.

If we recognise that a child can’t meet the demand, we investigate what is happening underneath it.

And if a child can’t access the provision being offered, the answer cannot be to keep offering the same provision with increasing pressure.

That’s why this isn’t just a question of language.

It’s a question of policy.

Attendance policy.
Behaviour policy.
SEND decision-making.
Provision.
Inclusion.

All of it changes depending on whether the starting assumption is:

“How do we make this child do it?”

or:

“What is preventing this child from being able to?”

Because sometimes the biggest barrier facing a child isn’t that nobody can see their distress.

It’s that the adults can see it and have interpreted it as a choice.

Has your child’s “can’t” ever been treated as “won’t”? What did that assumption lead to?

09/08/2026

Who is actually feeling that improvement?

Because improvement cannot simply mean a new strategy, another action plan, a restructure, a new panel or better performance figures.

For families, improvement should mean children receiving education when they need it.

It should mean EHCP’s being lawful, quantified and actually delivered.

It should mean decisions being made on professional evidence rather than budgets, thresholds or internal policy.

It should mean families no longer having to spend years complaining, appealing and pursuing legal routes simply to secure provision that should already have been put in place.

And where there has been repeated or systemic failure, we also need to ask whether rganisations that have demonstrated serious weaknesses in SEND decision-making automatically be trusted with even greater discretion and power?

That matters enormously as SEND reform increasingly talks about earlier intervention, local decision-making, national standards and potentially changing the role of EHCP’s and Tribunal rights.

Greater flexibility can work when systems are accountable and children’s rights are protected.

But greater discretion in a poorly functioning system can simply create greater opportunity for poor decisions to go unchallenged.

Families do not experience “continuous improvement” as a corporate objective.

They experience the system through whether their child is educated.

Whether provision arrives.

Whether professionals listen.

Whether lawful decisions are made.

And whether somebody is actually accountable when they are not.

So perhaps the measure of SEND improvement should not be what a Local Authority says it is doing differently and what the government currently ask it to report.

It should be whether children and families can actually feel the difference.

Lucy Powell MP
Andy Burnham
Children's Commissioner for England
Department for Education

09/08/2026

A child’s needs shouldn’t depend on which professional is sitting in front of them.

For many PDA families, one professional may recognise an autistic child’s PDA profile, while another avoids the term or interprets the same presentation very differently.

The child hasn’t changed. The level of understanding has.

And that matters, because professional understanding can shape how behaviour is interpreted, what approaches are recommended and whether families are believed when they say something isn’t working.

We don’t need every professional to agree on every debate around PDA before children can be better supported.

We do need greater consistency in recognising the needs in front of us.

💬 Have you experienced different professionals having completely different levels of understanding your child’s PDA profile?

The petition closes on 20 August.

I’m calling for National Support Standards for autistic children with a PDA profile, so understanding and support don’t depend on who a family happens to encounter.

• Sign the petition - link in bio
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• Help one more person understand

Day 29 of 40

Because inconsistency in professional understanding can have very real consequences for children and families.

09/08/2026

What happens when parents do everything the SEND system asks of them, and their children are still left waiting?

There is a side of the SEND crisis I wish more people outside this system understood.

The extraordinary amount of time, money, knowledge and emotional energy families are expected to spend simply trying to secure what their children are already legally entitled to.

I am currently sitting with two EHCP’s that I do not believe are sufficiently specified or quantified, despite repeatedly asking for them to be corrected.

I don’t want to take my children’s cases to Tribunal.

I want the Local Authority to make lawful, evidence based decisions now.

Because what does anybody gain from forcing a family through an appeal process that can take many months, potentially more than a year, to reach a hearing, when the LA has the power to resolve those issues without waiting for a judge?

My children certainly don’t gain from it.

They have already experienced significant periods without suitable education.

So what exactly are parents supposed to do?

We write emails.
Attend meetings.
Submit evidence.
Request amendments.
Make complaints.
Escalate complaints.
Approach the Ombudsman.
Appeal to Tribunal.
Seek legal advice.

In my own case, I have even had to instruct solicitors and issue a Letter Before Action regarding failures to provide provision. My LA missed both deadlines for responding, and we are now progressing legal action.

Think about how extraordinary that is.

A parent having to consider court proceedings to try to secure provision that should already have been delivered.

And every one of these processes requires something more from the family, another document, another piece of evidence, another deadline, another explanation of a child’s needs, another understanding of legislation most parents never imagined they would need to learn.

Meanwhile, a child is still waiting.

That is the part missing from so much of the misleading rhetoric about SEND families in the media.

People see parents “fighting the system” and assume we are demanding more.

They don’t see the hours spent reading legislation late at night.

They don’t see the cost of professional reports and legal advice.

They don’t see parents reducing work or giving it up entirely because their child has no suitable education.

They don’t see the emotional toll of repeatedly having to prove needs that professionals have already identified.

And most importantly, they don’t see the educational disadvantage accumulating while these processes drag on.

We are not fighting for special treatment.

We are often fighting for the provision already identified as necessary for our children to access education.

There has to be a serious policy conversation about this.

A right that takes a family years, thousands of pounds and extensive legal knowledge to enforce is not equally accessible to every child.

And a system that repeatedly forces parents into Tribunal, complaints, Ombudsman investigations and legal proceedings before statutory duties are fulfilled isn’t functioning as an effective system of accountability.

I wish more people could see the reality behind the SEND headlines.

The paperwork.
The financial cost.
The lost education.
The exhaustion.
The advocacy required simply to keep going.

Because while the system moves from process to process, our children’s childhoods are moving too.

And they don’t get those years back.

08/08/2026

“PDA isn’t recognised in this area.”

If a parent is told this by a Local Authority, my first question would be:

Recognised by whom, and what exactly are you refusing to recognise?

Because a Local Authority does not get to create its own geographical version of SEND law.

PDA is not currently a standalone diagnosis within the ICD or DSM, but it is recognised as a profile of autism.

But that is very different from saying that the profile of need does not exist, that professional evidence describing it can simply be disregarded, or that a child does not require support because an individual Local Authority has decided that it “doesn’t recognise PDA”.

And this distinction matters.

The Department for Education explicitly referred to children and young people with “profiles of need such as pathological demand avoidance” when discussing the development of the new National Inclusion Standards.

The Government have also previously stated:

“Access to support should not be dependent on a child or young person having a diagnosis.”

NICE guidance already identifies demand avoidant behaviour amongst features that can suggest autism.

So how can a Local Authority reasonably respond to evidence of those needs with:

“We don’t recognise PDA here”?

SEND provision is supposed to be needs-led, not postcode-led and not diagnosis-led.

If a child experiences extreme distress around demands, loss of autonomy or uncertainty, if conventional behaviour approaches escalate rather than reduce distress, if professional evidence says adults need to understand that child’s demand avoidant presentation, or if particular communication and environmental approaches are necessary for that child to access education, those are needs that require consideration regardless of what terminology an LA prefers.

For children with EHCP’s, this becomes particularly important.

Section B should describe the child’s identified special educational needs.

Section F should specify the special educational provision required to meet those needs.

The question shouldn’t be:

“Does this Local Authority recognise PDA?”

It should be:

“What does this individual child need to access education, and what does the evidence say is required to meet those needs?”

A Local Authority cannot make a child’s needs disappear by refusing to use a particular word.

And perhaps this is exactly why national consistency matters.

Because a child’s ability to have their needs understood should never depend upon whether the professionals or Local Authority in their postcode happen to “recognise” their particular presentation.

Different postcode. Same child. Same needs. Same right to an education that they can actually access.

08/08/2026

Families don’t struggle because their child is the problem.

They struggle when the level of support their child needs is greater than the understanding and support available around them.

For some families supporting an autistic child with a PDA profile, that gap can be enormous.

None of this is about blaming the child.

It’s about recognising what happens when families are left filling gaps that better understanding and appropriate support could help prevent.

Families deserve the capacity to be more than advocates, coordinators and crisis managers.

They deserve the space to simply be a family.

💬 What do you wish people understood about the emotional toll on families when the right support isn’t there?

The petition closes on 20 August.

I’m calling for National Support Standards for autistic children with a PDA profile, because understanding and appropriate support can make a difference to the whole family.

• Sign the petition - link in bio
• Share this post
• Help one more person understand

Day 28 of 40

Because families shouldn’t have to become exhausted filling the gaps left by a lack of understanding and support.

07/08/2026

For anyone local to BCP.

Connie Rothman Learning Trust is currently seeking planning permission to change the former Southbourne Grove House into a school, with plans for a permanent specialist secondary school and sixth form for up to 45 young people with SEN.

With the shortage of suitable specialist provision in our area, this could be a much-needed addition for local children and families.

The planning application is currently under consideration, and the Trust is asking local people who support the proposal to submit their views to BCP Council.

https://www.bcpcouncil.gov.uk/planning-and-building-control/search-and-comment-on-planning-applications

Planning application: P/26/03208/FUL

If you’re local to BCP, please have a look and consider showing your support 💛

07/08/2026

At what point do we stop asking how to make children attend school, and start asking why so many children are struggling to attend in the first place?

The previous Prime Minister introduced increasingly stringent attendance measures - greater monitoring, daily attendance data, national thresholds and tougher approaches to penalty notices.

Yet persistent absence remains.

So if increasing pressure hasn’t solved the problem, why is the policy response still focused so heavily on finding new ways to increase attendance?

The latest suggestion is that more enrichment on Fridays could tackle the so-called “Friday problem” is a perfect example.

I have nothing against enrichment. Done well, it can be hugely valuable.

But what if Friday absence isn’t telling us that children need something more exciting to persuade them through the school gates?

What if Friday is telling us something about capacity?

For a child struggling with sensory overload, anxiety, or the cumulative demands of the school week, Friday may simply be the point at which they have nothing left to give.

You cannot enrichment-activity a child out of nervous system overload.

And you cannot solve unmet need by measuring attendance more closely.

There is a danger that the Government continue designing policy around the assumption that absence represents disengagement, when for a significant group of children it may represent distress, unmet need or an education system they are simply no longer able to access.

If Government genuinely wants to understand why absence remains so high, they need to understand what has changed that means so many children are struggling to be there..

Look at SEND support.
Look at mental health.
Look at sensory environments.
Look at unmet need.
Look at waiting lists.
Look at school cultures and behaviour policies.
Look at children whose needs are identified only after attendance collapses.

Because when repeated attendance initiatives don’t resolve the problem, it’s time to stop tightening the attendance lever and investigate what is driving the absence.

Policy should respond to the cause, not continually apply more pressure to the symptom.

Lucy Powell MP
Department for Education
Andy Burnham
Helen Hayes
Children's Commissioner for England

07/08/2026

Families who have lived this know that EOTAS is rarely the easy option, sometimes it’s the only option that finally works. Please read and have your say before the consultation closes 💛

New on the Substack.

The government wants to reform EOTAS. I read it all as parent who has lived it, and as someone who supports families living it now.

What’s in there: EOTAS gated behind a package designed around “groups of children and young people who share similar characteristics.” A school put in charge of the arrangement. Personal budgets mentioned once, in the glossary, then never again with no right of appeal when a local authority changes or ceases it.

Their data says over 90% of children on EOTAS are eleven or older.

The age profile doesn’t tell you when children need EOTAS. It tells you how long it takes families to get it.

The consultation closes 11:59pm, 18 September. You can respond, the piece ends with the four questions I’d prioritise if you only have an evening.

Full piece with more detail that a post could ever hold here: beaminclusion.substack.com 🔗 link in bio

Understanding is everything.