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One of the most common questions I receive from parents is:

“Is PDA a type of autism?”

The short answer is:

Most professionals who recognise PDA view it as a profile within the autism spectrum.

However, the longer answer is a little more complicated.

And that’s where many families become confused.

What Is PDA?

PDA stands for Pathological Demand Avoidance, although many people now prefer the term:

Persistent Drive for Autonomy.

The PDA profile was first identified by psychologist Elizabeth Newson, who noticed that some autistic children presented very differently from what professionals typically expected.

These children often appeared:

• Highly sociable on the surface
• Skilled at masking their difficulties
• Extremely anxious when faced with demands
• Highly resistant to everyday expectations
• Driven by a strong need for autonomy and control

Parents often describe feeling as though traditional parenting strategies simply don’t work.

Rewards don’t work.

Consequences don’t work.

Behaviour charts don’t work.

And the harder adults push, the harder the child pushes back.

Is PDA Officially Recognised?

This is where things become confusing.

In the UK, many clinicians, psychologists, therapists, schools and local authorities recognise PDA as a useful way of describing a particular autism profile.

However, PDA is not currently listed as a separate diagnosis within international diagnostic manuals such as:

• DSM-5
• ICD-11

As a result:

Some professionals will describe a child as:

“Autistic with a PDA profile.”

Others may avoid using the term altogether.

This means that two families with very similar children can receive very different explanations depending on which professional they see.

Why Do Parents Find PDA Helpful?

For many families, learning about PDA feels like someone has finally described their child accurately.

Parents often tell us:

“For years I thought I was doing something wrong.”

“Nothing the parenting books suggested worked.”

“People kept telling me to be stricter.”

“School said my child was choosing not to comply.”

Then they discover PDA.

Suddenly, many of their experiences begin to make sense.

Common Characteristics of a PDA Profile

Every child is different, but parents often describe:

Extreme Demand Avoidance

Even simple requests can trigger anxiety.

This might include:

• Getting dressed
• Brushing teeth
• Going to school
• Turning off a game
• Sitting down for dinner

Anxiety Around Loss of Control

Many children experience demands as a threat to their autonomy.

What appears to be defiance is often anxiety.

Use of Social Strategies

Children may negotiate, distract, joke, bargain or change the subject rather than directly refuse.

Masking

Many children hold everything together at school and then completely fall apart at home.

Difficulty With Traditional Behaviour Management

Strategies that work for many children can sometimes increase anxiety and escalation in children with a PDA profile.

Why Is PDA Sometimes Controversial?

Not all professionals agree on PDA.

Some believe it is a distinct and useful autism profile.

Others feel there is not yet enough evidence to support it as a separate clinical category.

This disagreement can leave families feeling frustrated.

Many parents report being told:

“PDA doesn’t exist.”

At the same time, other professionals are actively using the term to guide support strategies.

Does PDA Change the Support a Child Needs?

For many families, the biggest value of understanding PDA is not the label itself.

It’s understanding the child.

When adults understand that anxiety may be driving behaviour, they often begin approaching situations differently.

This may involve:

• Offering more choices
• Reducing unnecessary demands
• Using collaboration instead of confrontation
• Building trust and flexibility
• Focusing on regulation before compliance

Every child is different, and there is no one-size-fits-all approach.

The Most Important Thing to Remember

Whether a professional uses the term PDA or not, many families are describing the same experiences.

A child who appears defiant but is actually anxious.

A child who struggles with demands in ways that seem impossible to explain.

A child who needs understanding rather than judgement.

For many parents, discovering PDA isn’t about chasing a label.

It’s about finally finding language that helps them understand their child.

And sometimes that understanding can change everything.

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Need Help Navigating PDA, Autism or SEND Support?

AskEllie helps families understand SEND, EHCPs, school support, DLA and disability benefits.

Visit AskEllie.co.uk for practical guidance and support.

This week, Education Secretary Bridget Phillipson announced new guidance for schools following concerns that some SEND inclusion bases are being used as a sanction rather than a support.

At the centre of the announcement was a statement that many SEND parents will find both welcome and frustrating:

Having SEND is not the same as bad behaviour.

For many families, that message will feel long overdue.

A Conversation SEND Parents Have Been Having for Years

If you’re the parent of an autistic child, a child with ADHD, PDA, sensory processing difficulties, anxiety, or other additional needs, chances are you’ve had some version of this conversation before.

Your child is struggling.

They’re overwhelmed.

They’re anxious.

They’re masking all day.

They’re dysregulated.

And yet the response from school focuses on behaviour rather than understanding what is driving it.

Many parents describe being told their child is:

• Defiant
• Disruptive
• Refusing
• Attention-seeking
• Naughty

When what they are actually seeing is distress.

Behaviour Is Often Communication

One of the most important lessons many SEND parents learn is that behaviour rarely happens in isolation.

Children communicate through behaviour long before they can explain what they are feeling.

An autistic child who lashes out may be overwhelmed by noise.

A child with PDA may be experiencing intense anxiety around demands.

A child with ADHD may be struggling to regulate impulses.

A child in burnout may appear withdrawn, exhausted, or unable to engage.

Punishing the behaviour without understanding the cause rarely solves the problem.

In many cases, it makes things worse.

The Problem With Labelling SEND As Bad Behaviour

When SEND needs are mistaken for poor behaviour, children can quickly find themselves trapped in a cycle.

They struggle.

They are punished.

Their anxiety increases.

They struggle even more.

The punishment escalates.

Parents often describe feeling like they spend years trying to convince professionals that their child is not choosing to struggle.

The result can be exclusions, reduced timetables, emotionally based school avoidance (EBSA), school trauma, and a complete breakdown in trust between families and schools.

Why The New Guidance Matters

The Government’s new guidance is aimed at ensuring inclusion bases are used for their intended purpose.

These spaces are designed to provide support, specialist interventions, and opportunities for children to regulate and access learning.

They are not intended to be a punishment room.

The guidance also makes clear that children using these bases should remain part of the wider school community, participating in lessons, activities, trips, and school life wherever possible.

That principle is important.

Support should help children belong.

It should not isolate them.

Parents Will Ask One Question

While many families will welcome the announcement, others may ask a simple question:

Why did we need national guidance to say this in the first place?

SEND parents have been raising concerns about behaviour policies, exclusions, isolation rooms, and misunderstanding of additional needs for years.

For some families, this announcement feels less like a new discovery and more like official recognition of something they have already experienced.

The Real Challenge

The challenge now is not simply publishing guidance.

The challenge is making sure it changes practice.

Parents do not need more policies sitting on shelves.

They need school staff who understand SEND.

They need early support.

They need appropriate training.

They need systems that recognise when a child is struggling rather than assuming they are choosing to misbehave.

Most importantly, they need schools where children feel understood.

Looking Forward

Every child deserves to feel safe, included, and supported in school.

Most teachers want exactly that too.

The vast majority are working incredibly hard within a system that is often under significant pressure.

But if this week’s announcement tells us anything, it is that there is still work to do.

Because having SEND is not bad behaviour.

And for many families, that is a lesson they have been trying to teach the system for years.

As temperatures rise across the UK, many parents are asking the same question:

What happens if my child genuinely cannot cope with school during a heatwave?

For many children, hot weather is simply uncomfortable.

For some autistic, ADHD and other neurodivergent children, it can be far more significant.

The combination of heat, bright sunlight, sensory overload, disrupted routines, poor sleep and dehydration can make school feel overwhelming.

Why Heat Can Affect Neurodivergent Children Differently

Many neurodivergent children experience:

• Difficulties recognising thirst or overheating.
• Sensory sensitivities to heat, clothing, sunlight or humidity.
• Increased anxiety and dysregulation.
• More frequent meltdowns or shutdowns.
• Sleep disruption, leading to exhaustion the following day.
• Challenges communicating when they are becoming physically distressed.

Some children may continue wearing coats, jackets or preferred clothing despite hot weather because of sensory needs.

Others may not recognise they are becoming overheated until they reach crisis point.

This can create additional challenges in school environments where classrooms, playgrounds and dining halls may become extremely warm.

Should Parents Keep Their Child Off School?

There is no simple yes or no answer.

In most cases, schools should first consider whether reasonable adjustments can help a child safely access education during periods of extreme heat.

Examples may include:

• Access to cooler rooms or shaded areas.
• Relaxed uniform requirements.
• Additional drink breaks.
• Access to fans or cooling equipment.
• Indoor alternatives during break and lunch.
• Flexibility around activities that may increase heat exposure.
• Earlier identification of signs of distress.

The focus should be on supporting attendance wherever possible while ensuring the child’s health, safety and wellbeing are protected.

What Schools Should Understand

A child who appears “fine” may still be struggling.

Heat can increase:

• Anxiety.
• Sensory overwhelm.
• Irritability.
• Fatigue.
• School avoidance.
• Emotional dysregulation.

Behaviour that appears oppositional may actually be a sign that the child’s nervous system is overwhelmed.

This is particularly important for autistic children, children with ADHD, PDA profiles, sensory processing difficulties and other SEND needs.

Practical Tips for Parents

• Encourage regular drinks throughout the day.
• Consider cooling towels or sensory-friendly cooling products.
• Prioritise sleep where possible.
• Communicate concerns with school early.
• Monitor for headaches, dizziness, unusual fatigue or increased distress.
• Explain any sensory barriers to changing clothing or removing jackets.

The Most Important Thing

Every child is different.

What works for one child may not work for another.

The goal should never be attendance at all costs.

The goal should be helping children remain safe, regulated and able to learn.

If heat is significantly affecting your child’s ability to access education, speak to the school as early as possible and work together to identify reasonable adjustments that may help.

LETTER TEMPLATE FOR SCHOOL

Subject: Urgent Concerns Regarding Heatwave and My Child’s SEND Needs

Dear [Headteacher/SENCO],

I am writing regarding the current high temperatures and the impact they are having on my child, [Child’s Name].

As a child with [Autism / ADHD / Sensory Processing Difficulties / PDA / Other SEND], [Child’s Name] experiences significant difficulties that can be made worse by extreme heat. These include [sensory sensitivities, anxiety, emotional dysregulation, difficulties recognising thirst, difficulties recognising when they are overheating, sleep disruption, communication difficulties, etc.].

I am increasingly concerned that the current weather conditions may be affecting their ability to safely access education and remain regulated throughout the school day.

In particular, I have observed:

• [Insert examples]
• [Insert examples]
• [Insert examples]

I would therefore like to request that the school considers reasonable adjustments during this period of hot weather, including where appropriate:

• Flexibility around uniform requirements.
• Access to cooler indoor spaces.
• Additional water and drink breaks.
• Opportunities to avoid direct sunlight where possible.
• Access to sensory or regulation breaks if required.
• Consideration of indoor alternatives during particularly hot periods.

I appreciate that schools are facing challenges during the heatwave, however I believe it is important that [Child’s Name]’s SEND needs and welfare are taken into account when considering how they can safely access education.

I would be grateful if we could discuss any additional support or adjustments that may help during this period.

Thank you for your understanding and support.

Kind regards,

[Parent Name]

[Child’s Name]
[Year Group]

The Government has published its response to the Education Committee’s inquiry into the SEND system, and one message is becoming increasingly clear:

The long-term ambition is for more children with SEND to have their needs met in mainstream schools, reducing reliance on specialist placements.

On the surface, many parents would agree with that goal.

Most families do not start their SEND journey wanting a specialist school. Most simply want their child to attend a local school, make friends, feel safe and receive the support they need.

The problem is that many families feel the current system is already struggling to deliver that support.

The Question Parents Keep Asking

Every day, we hear from parents whose children are:

• Unable to attend school due to anxiety or EBSA.
• Waiting years for assessments.
• Masking all day and then falling apart at home.
• Being excluded, suspended or placed on reduced timetables.
• Waiting months or years for EHCP assessments and support.

For those families, the question isn’t whether mainstream schools should be more inclusive.

The question is:

What needs to change before more children can successfully remain in mainstream education?

Because inclusion only works when the support is there.

Parents Are Not Anti-Mainstream

This is an important point that often gets lost.

Many children with SEND thrive in mainstream schools.

Many schools work incredibly hard to support children despite limited resources.

Many teachers go above and beyond every day.

Parents are not arguing against mainstream education.

They are asking whether the system currently has the staffing, training, funding and specialist expertise needed to support more children with increasingly complex needs.

What Families Tell Us

Over the past year, thousands of parents have shared their experiences with AskEllie.

Common themes include:

• “The school says they have no concerns.”
• “My child masks all day.”
• “Nobody sees what happens after school.”
• “We’ve been waiting years for help.”
• “We only got support after reaching crisis point.”

These stories are not isolated incidents.

They are being repeated by families across the country.

That is why many parents are nervous when they hear discussions about reducing reliance on specialist provision.

Not because they oppose inclusion.

But because they worry that inclusion without support simply becomes another word for unmet need.

Why Parent Voices Matter

For too long, decisions about SEND have often been discussed without enough involvement from the families living it every day.

Parents understand the reality behind attendance statistics.

They understand the impact of masking.

They understand what happens when support arrives too late.

Most importantly, they understand what works and what doesn’t.

That is why parent voices must be at the centre of any future reforms.

The SEND Coalition

On 29th July, the SEND Coalition will begin bringing together parents, campaigners, professionals, MPs and peers.

The aim is simple:

To ensure that SEND families have a meaningful voice in conversations about the future of education and support.

This is not about politics.

It is not about confrontation.

It is about asking important questions, sharing lived experience and ensuring that policy is informed by the people most affected by it.

The Real Question

The debate should not be whether mainstream schools or specialist schools are better.

Different children need different support.

The real question is:

If more children are expected to have their needs met in mainstream schools, what needs to change first?

Because every parent wants the same thing:

A system that understands their child, supports their child and gives them the opportunity to thrive.

Until families can confidently say that support is already in place, many will continue asking the same question:

Why should we believe this time will be different?

Published: 17 June 2026

For years, parents of children with Special Educational Needs and Disabilities (SEND) have been saying the same thing:

The system is broken.

Families have spoken about long waits for support, battles for EHCPs, schools struggling to meet needs, rising exclusions, increasing numbers of children unable to attend school, and the emotional toll this takes on entire families.

Until now, many parents have felt ignored.

But something significant happened on 17 June 2026.

The Government formally responded to Parliament’s report on the SEND crisis and, for the first time, has effectively acknowledged what families have been saying for years:

The SEND system is not working.

Why This Matters

This isn’t simply another consultation or political announcement.

This is the Government’s official response to the Education Select Committee’s inquiry into SEND.

The report recognises that the current system is failing:

• Children
• Parents
• Schools
• Local Authorities

That alone is a major moment.

For years, families have had to fight to convince decision-makers that the problems they face are real. The debate is no longer about whether there is a crisis.

The Government has now acknowledged that there is one.

What Is The Government Proposing?

The response sets out a number of major reforms designed to improve support for children and young people with SEND.

1. National Inclusion Standards

One of the biggest proposals is the introduction of National Inclusion Standards.

The aim is to create a clearer expectation of what support should be available in every school, regardless of where a child lives.

Parents often tell us that support depends heavily on postcode and individual schools. The Government says these standards will help create more consistency across the country.

2. More Support In Mainstream Schools

The Government wants mainstream schools to become more inclusive and better equipped to support children with additional needs.

This includes:

• Better staff training
• Earlier intervention
• Greater access to specialist advice
• More resources for schools

The goal is to provide support before families reach crisis point.

3. Earlier Access To Specialists

The Government has announced plans for what it calls “Experts at Hand.”

This aims to give schools easier access to professionals such as:

• Educational Psychologists
• Speech and Language Therapists
• SEND specialists
• Mental health professionals

Many families currently wait months or even years for assessments and specialist input. The proposal aims to make support available much earlier.

4. Increased Investment

The Government has also announced significant funding commitments, including billions of pounds for SEND reforms, inclusion support and specialist provision.

While funding announcements are always welcome, families will understandably want to see how this translates into real support on the ground.

What About EHCPs?

Many parents have understandably asked whether EHCPs are being removed.

Based on the Government’s response, there is currently no indication that EHCPs will disappear.

Instead, the focus appears to be on improving support available before children require an EHCP and making mainstream settings more inclusive.

Children with the most complex needs are still expected to require specialist provision and statutory protection.

What Does This Mean For Families Right Now?

The honest answer is:

Not much will change overnight.

This response is an acknowledgement of the problem and a statement of intent.

Families will still face many of the same challenges tomorrow that they faced yesterday.

However, something important has changed.

The Government has now publicly accepted that the system is failing too many children and families.

That gives campaigners, parents and organisations a much stronger foundation from which to push for meaningful change.

Families Will Be Watching Closely

Parents have heard promises before.

Many families have spent years fighting for support that should never have required a battle in the first place.

The real test will not be the announcements.

The real test will be whether:

• Children receive support earlier.
• Schools become more inclusive.
• Waiting times improve.
• Families experience fewer battles.
• Outcomes improve for children and young people.

What’s Next?

At AskEllie, we will be analysing these proposals in more detail over the coming weeks and sharing what they could mean for families.

Importantly, Rebecca and I will also be returning to Parliament on Monday 29 June for further discussions around the future of SEND support and reform.

There are some important conversations taking place behind the scenes, and we hope to be able to share more with you very soon.

For now, one thing is clear:

The SEND crisis is no longer something families are saying exists.

The Government has now formally acknowledged it too.

Stay tuned.

Click below for the full report

REPORT

One of the biggest questions parents ask is:

“Why does it seem like there are so many more autistic children today?”

It’s a fair question.

Autism diagnoses have increased dramatically over the last few decades. In schools, support services, waiting lists and online communities, more families than ever are talking about autism.

But does this mean autism itself is becoming more common?

Or are we simply getting better at recognising it?

The honest answer is that researchers are still trying to understand the full picture.

Better Awareness Means More Children Are Being Identified

For many years, autism was understood very differently than it is today.

Children who struggled socially, experienced sensory difficulties, became overwhelmed easily, or had unusual interests were often labelled as:

• Shy
• Anxious
• Difficult
• Naughty
• Attention-seeking
• Poorly behaved

Many autistic children simply weren’t recognised.

This was especially true for:

• Girls
• High-masking children
• Children with PDA profiles
• Children who performed well academically
• Adults who never received support growing up

Today, awareness is far greater than it was 20 or 30 years ago.

Teachers, parents, health professionals and schools are more likely to recognise autistic traits and refer children for assessment.

As a result, many children who would once have been overlooked are now receiving diagnoses and support.

Diagnostic Criteria Have Changed

Another reason diagnosis rates have increased is that the way autism is diagnosed has evolved.

Years ago, only children with more obvious presentations of autism were likely to receive a diagnosis.

Today we understand that autism exists across a wide spectrum of experiences.

Some autistic children may be highly verbal.

Some may have strong friendships.

Some may mask their difficulties at school but completely unravel at home.

As our understanding has improved, more children who previously wouldn’t have met diagnostic criteria are now being recognised.

Could There Be Other Factors?

Some researchers believe that increased awareness and changing diagnostic criteria explain a large part of the rise in autism diagnoses.

However, some studies suggest these factors may not explain all of the increase.

This has led researchers to explore whether environmental factors may also play a role alongside genetics.

One area being investigated is something called epigenetics.

Epigenetics looks at how genes and environmental influences may interact.

Autism is known to have a strong genetic component, but researchers are studying whether environmental factors before birth or during early development could influence how genetic traits are expressed.

It is important to stress that scientists do not currently have clear answers.

There is no single proven environmental cause of autism.

The research is ongoing.

What We Know For Certain

There is still much to learn about autism.

But there are some things researchers broadly agree on:

• Autism has a strong genetic basis.
• Awareness and recognition have improved significantly.
• More children are now being identified who would previously have been missed.
• Scientists are continuing to investigate why diagnosis rates have increased.
• There is no single accepted explanation for the rise in autism diagnoses.

The Question That Matters Most

While researchers continue exploring why autism diagnoses are increasing, many families are asking a different question:

“How do we make sure autistic children get the support they need?”

Across the UK, families continue to face:

• Long assessment waiting lists
• Delays accessing support
• School attendance difficulties
• Challenges securing EHCPs
• Mental health struggles caused by unmet needs

Whether autism is becoming more common or whether we are simply getting better at recognising it, one thing is clear:

Thousands of autistic children still aren’t receiving the support they need quickly enough.

And for many parents, that’s the issue that matters most.

What Do You Think?

Do you believe the rise in autism diagnoses is mainly due to better awareness and recognition?

Or do you think there may be other factors involved?

Let us know your thoughts.

At AskEllie, we believe the most important thing is ensuring autistic children and their families receive understanding, acceptance and the support they deserve.

The government is considering new restrictions on social media and online platforms for children.

Supporters argue these measures are needed to protect young people from harmful content, cyberbullying, online predators and the negative effects excessive screen time can have on mental health.

It’s a conversation worth having.

But there is one question I rarely hear being asked:

What could this mean for autistic and ADHD children?

Not All Screen Time Is The Same

When people think about YouTube, they often think about mindless scrolling.

Hours lost watching random videos.

Algorithms keeping children glued to screens.

And yes, that does happen.

But for many neurodivergent children, YouTube serves a very different purpose.

For some autistic children, YouTube isn’t simply entertainment.

It’s:

• A way to explore special interests
• A source of comfort and predictability
• A learning tool
• A place to discover new skills
• A way to regulate after a difficult day

Many parents will recognise the child who can spend hours learning about trains, history, gaming, coding, science, music or animals.

To outsiders it might look like screen time.

To that child, it might feel like learning, connection and relaxation.

For Some Children, It Feels Safer Than The Playground

This is perhaps the most important point.

Many autistic and ADHD children struggle socially.

Some experience bullying.

Some feel isolated.

Some spend years feeling different from their peers.

For those children, online communities can provide something they struggle to find elsewhere:

Belonging.

Many neurodivergent young people describe finding others who share their interests, experiences and ways of thinking through online platforms.

For some, that connection can be incredibly valuable.

In fact, many parents tell us their child feels more accepted online than they do in school.

The Potential Benefits of Restrictions

This doesn’t mean there are no risks.

There absolutely are.

Many neurodivergent children can be vulnerable online.

Some may struggle to recognise manipulation.

Some may become overwhelmed by content.

Others may spend so much time online that sleep, exercise and real-world relationships begin to suffer.

These are genuine concerns.

And parents deserve support to navigate them.

The question isn’t whether children should be protected.

The question is whether one solution works for every child.

Could There Be Unintended Consequences?

Whenever governments introduce large-scale changes, it’s important to consider unintended consequences.

If a child relies heavily on YouTube or online communities for:

• Learning
• Regulation
• Social connection
• Access to special interests

What happens if that suddenly disappears?

Will alternative spaces exist?

Will there be neurodivergent-friendly platforms?

Will children who already feel isolated become even more isolated?

These questions deserve careful consideration.

Listening to Neurodivergent Young People

Perhaps the most important voices in this debate are the ones we hear least often.

The young people themselves.

Too often decisions are made about autistic and ADHD children without asking them how those decisions might affect their daily lives.

Some may welcome restrictions.

Others may feel anxious about losing an important part of their routine and connection to the world.

The reality is likely to be far more nuanced than headlines suggest.

The Conversation We Need To Have

This isn’t an argument against online safety.

Children should be protected.

Parents should be supported.

Platforms should be held accountable.

But it’s also important to recognise that neurodivergent children often experience the online world differently.

For some autistic and ADHD children, YouTube isn’t simply a source of entertainment.

It’s a source of understanding.

A source of learning.

A source of comfort.

And sometimes, a source of connection in a world that can often feel overwhelming.

As this debate continues, let’s make sure neurodivergent children are part of the conversation.

Because protecting children matters.

But understanding them matters too.

One of the most difficult parts of raising a child with autism, ADHD, PDA or other SEND needs is something that rarely gets talked about.

What happens when one parent accepts the diagnosis… and the other doesn’t?

At AskEllie, we hear this story far more often than people realise.

One parent is researching autism.

Attending appointments.

Reading reports.

Speaking to school.

Fighting for support.

Trying to understand why their child is struggling.

Meanwhile, the other parent may still be saying:

“There’s nothing wrong with them.”

“They’re just being difficult.”

“They need firmer boundaries.”

“You’re making excuses for them.”

The result can be heartbreaking.

Not only is the child struggling, but the parents can find themselves on completely different pages.

Why Does This Happen?

It’s easy to assume that the parent who doesn’t accept the diagnosis simply doesn’t care.

But often the reality is more complicated.

For some parents, accepting a diagnosis can bring feelings of:

• Grief
• Fear
• Guilt
• Confusion
• Worry about the future

Some may fear their child will be labelled.

Others may worry about what the diagnosis means.

Some may even see traits of themselves in their child and struggle with what that might mean for them personally.

Denial can sometimes be a way of protecting themselves from difficult emotions.

The Parent Carrying the Load

One of the most common themes we hear from SEND parents is feeling alone.

When one parent accepts the diagnosis and the other doesn’t, the responsibility often falls heavily on one person.

They become the one:

• Completing forms
• Chasing professionals
• Attending meetings
• Researching support
• Managing school communication
• Advocating for their child

At the same time, they may feel criticised by the person they need support from the most.

Many describe it as one of the loneliest parts of the SEND journey.

The Impact on Relationships

Having a child with additional needs can place enormous pressure on relationships.

Not because parents don’t love each other.

Not because they don’t love their child.

But because they may be processing the situation in very different ways.

One parent may be focused on acceptance and support.

The other may still be trying to make sense of what is happening.

This difference can create frustration, resentment and conflict.

Especially when decisions need to be made about assessments, school support, EHCPs or disability benefits.

Finding Common Ground

Every family is different, but one thing often helps.

Shifting the conversation away from labels and towards needs.

Instead of asking:

“Do you believe they have autism?”

Try asking:

“What support does our child need right now?”

Even when parents disagree about a diagnosis, they can often agree that their child is struggling.

Focusing on the child’s experiences rather than the label can sometimes help bridge the gap.

You’re Not Alone

If you’re the parent carrying the emotional and practical load while your partner struggles to accept your child’s diagnosis, please know you’re not alone.

This is one of the most common relationship challenges we hear about from SEND families.

It doesn’t mean your relationship is failing.

It doesn’t mean your partner doesn’t care.

And it doesn’t mean things can’t change.

For many families, acceptance comes with time, understanding and experience.

But until then, it’s important to remember that your feelings are valid too.

Because supporting a child who is struggling is hard enough.

Feeling like you’re doing it alone can be even harder.

If you’re claiming Universal Credit and have a long-term health condition, disability, or mental health condition that affects your ability to work, you may have heard people mention LCW or LCWRA.

But what do these terms actually mean?

And could they affect how much Universal Credit you receive?

In this guide, we’ll explain Limited Capability for Work (LCW) and Limited Capability for Work and Work-Related Activity (LCWRA) in plain English.

What Is LCWRA?

LCWRA stands for Limited Capability for Work and Work-Related Activity.

It’s part of the Universal Credit system and is designed for people whose health condition or disability significantly affects their ability to work.

If you’re awarded LCWRA:

• You won’t be required to look for work.
• You won’t be required to take part in work-related activities.
• You’ll receive an additional amount as part of your Universal Credit award.

For many people, LCWRA can make a significant difference financially while also reducing the pressure of work-search requirements.

How Do You Apply for LCWRA?

You don’t apply directly for LCWRA.

Instead, the process usually begins when you tell Universal Credit that you have a health condition that affects your ability to work.

This could happen:

• When making a new Universal Credit claim.
• After a change in circumstances while already claiming Universal Credit.

You’ll normally need to provide a fit note from your GP or healthcare professional.

What Is a UC50 Form?

Once you’ve reported your health condition and provided evidence, you’ll usually be sent a UC50 questionnaire.

This form is extremely important.

Many people assume the form is about their diagnosis.

It isn’t.

The DWP is primarily interested in:

• How your condition affects your daily life.
• What activities you struggle with.
• What support you need.
• How your symptoms affect your ability to work.

For example, simply writing “I have anxiety” is unlikely to be enough.

What matters is explaining how anxiety affects your ability to leave the house, communicate with others, manage appointments, travel independently, or cope in a workplace environment.

What Happens After the UC50 Form?

After returning the UC50 form, most people will be invited to attend a Work Capability Assessment (WCA).

This assessment may take place:

• By telephone
• By video call
• Face-to-face

The assessor will consider your questionnaire, medical evidence, and answers during the assessment.

Possible Outcomes of the Assessment

There are usually three possible outcomes.

1. Fit for Work

This means the DWP believes you’re capable of working and meeting normal Universal Credit work requirements.

You will normally be expected to look for work and attend appointments with your work coach.

2. Limited Capability for Work (LCW)

This means the DWP accepts that you’re not currently fit for work.

However, you may still be expected to take part in activities designed to help prepare you for work in the future.

These activities could include:

• Training courses
• Skills development
• CV preparation
• Work-focused interviews

Importantly, most new Universal Credit claimants do not receive additional money for LCW alone.

3. Limited Capability for Work and Work-Related Activity (LCWRA)

This is the highest level of support within the Work Capability Assessment process.

If you’re awarded LCWRA:

• You won’t be required to search for work.
• You won’t be expected to participate in work preparation activities.
• You’ll receive an additional Universal Credit payment.

This is often what people mean when they refer to the “health element” of Universal Credit.

When Does the Extra LCWRA Payment Start?

Many people are surprised to learn that LCWRA payments don’t usually begin immediately.

For most claimants, there is a waiting period before the additional amount is included in their Universal Credit award.

This often means the extra payment begins several assessment periods after the health condition is first reported and the necessary evidence is provided.

What If You Disagree With the Decision?

If you’re found fit for work, or you believe the wrong decision has been made, you have the right to challenge it.

Step 1: Mandatory Reconsideration

The first stage is called a Mandatory Reconsideration (MR).

This involves asking the DWP to review the decision.

Providing additional evidence and explaining why the decision is incorrect can be extremely important at this stage.

Step 2: Appeal to an Independent Tribunal

If the Mandatory Reconsideration is unsuccessful, you can appeal to an independent tribunal.

Many claimants are successful at tribunal, particularly where strong evidence is provided showing how their condition affects their ability to function and work.

The Biggest Mistake People Make

One of the most common mistakes people make throughout the LCWRA process is focusing entirely on their diagnosis.

The DWP is not simply assessing whether you have a condition.

They’re assessing how that condition affects your day-to-day functioning.

The strongest claims clearly explain:

• What difficulties you experience.
• How often they occur.
• What support you need.
• Why work or work-related activities would be difficult or impossible.

Final Thoughts

LCWRA can provide important financial support and remove work-search requirements for people whose health conditions significantly affect their ability to work.

The key thing to remember is that the process is not about proving a diagnosis.

It’s about demonstrating the real-world impact your condition has on your daily life and ability to function.

If you’re claiming Universal Credit and struggling because of a disability, long-term health condition, or mental health condition, understanding LCWRA could make a significant difference to your entitlement.

Most people know the stereotypical signs of autism and ADHD.

They think of hyperactivity.

Difficulty sitting still.

Social challenges.

Or intense special interests.

But many of the biggest struggles autistic and ADHD children face every day are things that most people never connect to neurodiversity at all.

Instead, they’re often mistaken for bad behaviour, laziness, carelessness, or a lack of effort.

Let’s look at five everyday challenges that many autistic and ADHD children experience.

1. Constantly Losing Things

How many times have you heard:

“Where’s your coat?”

“Have you seen your water bottle?”

“What happened to your school bag?”

For many autistic and ADHD children, losing things isn’t about not caring.

It can be linked to difficulties with working memory, attention, organisation, and executive functioning.

Their brains are often processing so much information at once that everyday objects simply disappear from their mental radar.

What looks like carelessness can actually be a genuine neurological challenge.

2. Emotional Outbursts Over Small Problems

The wrong cup.

A broken biscuit.

A missing toy.

A change of plan.

To an outsider, the reaction can seem completely out of proportion.

But for many autistic and ADHD children, emotional regulation is a real struggle.

Often, what appears to be an overreaction is actually the result of stress building throughout the day.

The small event isn’t the whole problem.

It’s simply the final straw.

Many children spend hours trying to cope with sensory overload, social pressures, anxiety, demands, and uncertainty before reaching a point where they can no longer hold everything together.

3. Getting Upset When Plans Change

Many families know this feeling.

You mention a change in plans and suddenly your child becomes anxious, upset, or distressed.

People often assume the child is being difficult.

In reality, many autistic and ADHD children rely heavily on predictability.

Knowing what is happening next helps them feel safe and in control.

Unexpected changes can create genuine anxiety because the mental picture they have built for the day suddenly disappears.

For some children, even a seemingly small change can feel overwhelming.

4. Interrupting Conversations

Parents often worry that their child is being rude when they constantly interrupt.

In many cases, this isn’t intentional.

Children with ADHD, and some autistic children, may struggle to hold thoughts in their working memory.

When an idea appears, it can feel urgent to say it immediately.

If they wait, they may genuinely lose the thought altogether.

What looks like poor manners is often a difficulty with impulse control and working memory rather than a lack of respect for others.

5. Forgetting Instructions Almost Immediately

You ask your child to:

Put their shoes on.

Get their school bag.

Bring their water bottle.

Thirty seconds later they’ve done none of them.

Many parents find this incredibly frustrating.

But once again, this can be linked to executive functioning and working memory difficulties.

Some children struggle to hold multiple pieces of information in their minds at the same time.

It’s not that they weren’t listening.

It’s not that they don’t want to cooperate.

Their brain simply struggles to store and process the information long enough to act on it.

Why Understanding Matters

One of the biggest challenges for autistic and ADHD children is that many of their struggles are invisible.

People see the behaviour.

They don’t always see the reason behind it.

When we misunderstand these difficulties, children can end up being labelled as lazy, naughty, rude, dramatic, or careless.

When we understand what’s really happening, we can offer support instead of punishment.

That shift in perspective can make an enormous difference to a child’s confidence, wellbeing, and relationship with the adults around them.

Final Thoughts

If your child constantly loses things, forgets instructions, gets upset when plans change, interrupts conversations, or has emotional outbursts over seemingly small problems, you’re not alone.

These struggles are far more common in autistic and ADHD children than many people realise.

Sometimes the behaviour that frustrates us the most is actually a sign that a child needs understanding rather than correction.

And often, that understanding is where positive change begins.