Autism and Education Consultant, Laura Kerbey, speaks with SOS!SEN about common mistakes supporting PDA children and an education that celebrates our differences

In our July blog post we’re delighted to welcome Laura Kerbey, an Autism and Education Consultant, trainer and author with more than 21 years’ experience supporting autistic children and young people. Laura began her career teaching in a mainstream college’s Supported Learning Department before moving into roles supporting young people with complex physical disabilities. She specialised in autism in 2002, later becoming Assistant Head and then Head Teacher at an independent special school. Laura is the author of several books, including The Educator’s Experience of PDA, The Teen's Guide to PDA and The Slightly Distracted Women's Guide to Living with an Adult ADHD Diagnosis (see all books here). Laura is also the founder of Positive Assessments Support and Training as well as co‑founder of KITE Therapeutic Learning Services, which provides bespoke therapeutic learning for children unable to attend school due to high anxiety or other needs.

Alongside her work with families, Laura advises schools, colleges and universities as an independent consultant, delivering widely recognised autism and PDA training. She has spoken internationally, including at the first‑ever PDA conference in the United States, and has previously presented at an SOS!SEN conference too. Laura brings deep professional expertise as well as lived experience: she is neurodivergent herself, diagnosed with ADHD in her forties, and is a parent to two neurodivergent sons. Thank you, Laura.

How can parents distinguish between “won’t” and “can’t” when it comes to behaviour, demand-avoidance, or school refusal? 

I think remembering “Can’t not Won’t” is one of the most important mindsets to have when parenting a demand avoidant child. To be honest you won’t always be able to distinguish between the two, but approaching everything with this mindset will ensure that parents meet their child’s needs with compassion and empathy. We need to look beneath the surface of all of the above, for example, if a child is struggling to go into school we need to ask questions like, “Do they have a safe space and a safe person they can access during times of anxiety?” And when demands are hard for a child at home we need to ask ourselves, “how full is their anxiety bucket?” or “what is this like from a sensory perspective? Is it that they cannot clean their teeth because they actually find the sensation of doing this too uncomfortable?

What do you wish every parent knew about PDA (Pathological Demand Avoidance), anxiety‑driven behaviours, and the nervous system?

It is not a choice and often children with a PDA profile actually really want to do things, but their anxiety stops them. We have to consider how frustrating this is for them, not just for us. Also a really nice phrase to remember is that “they are not giving you a hard time, they are having a hard time.” It is also really important to remember that children with a PDA profile are hypersensitive to things like body language, tone of voice etc and even other people’s moods. So if a child with PDA is picking up that their parent is getting frustrated or angry with them this will only cause them further anxiety. The higher their anxiety is the lower their demand tolerance will be, and vice versa.

PDA is still poorly understood in many schools. What are the biggest misconceptions you encounter?

Loads! Here are some of the ones I hear the most:

"We have worked with a child with PDA before" – assuming that all children with PDA need the same thing.

That the child is choosing to refuse to attend or do work.

That parents are exaggerating how their child behaves out of school as they can present so differently in different settings.

That children cannot mask for 5 or 6 hours a day 5 days a week – they can!!

That autism strategies are helpful for a PDA child – some are completely counterproductive and can make anxiety worse.

What does a truly neurodiversity‑affirming school environment look like in practice?

Treating all children as individuals. Ensuring all children have at least one safe person and one safe space as a minimum. That there will be good days and bad days and that progress is never linear. Also that staff who support neurodivergent children are fully supported as it can be a very challenging role at times. There has to be a whole school approach with consistency amongst staff and also a collaborative approach with parents who are regarded as the experts in their children.

What should parents focus on when gathering evidence for an EHCP needs assessment?

Useful evidence can include:

• Attainment gaps
• Lack of progress despite support
• Frequent exclusions or sanctions
• Reduced timetable
• High levels of distress at school
• School avoidance
• Difficulty participating in lessons, trips, or group activities

Rather than simply stating: "My child has PDA."

Show: "My child cannot follow many of the demands required of them to access their education, requires adult support during transitions, and misses approximately 30% of lesson time due to extreme anxiety and overwhelm."

What are the most common mistakes schools make when writing support plans or behaviour policies for neurodivergent children?

For a child with PDA it can be using too many autism specific strategies and approaches. As I have said before, it is really important to ensure a child centred approach that focuses on individual needs.  Not doing this is like trying to shove a square peg into a round hole. Also focusing on the underlying needs rather than observable behaviour and finding ways to support these rather than fixing the behaviour.

Parents often feel exhausted, judged, or isolated. What advice do you give to families who are at breaking point?

If possible, try and take a break. It’s a cliché but “Put your own oxygen mask on first.” You cannot help your child to stay regulated if you are not regulated yourself. Also, surround yourself with people who get “it” and your child. Avoid those who judge. Remember that you are the expert in your child. 

What changes would you most like to see in the SEND system to better support children with PDA, autism, or anxiety?

Too many! I would like children to get support quicker without such a fight for their parents. I would like teachers to have far more training on neurodiversity. The school system in general is not meeting the needs of so many children as it expects children to all follow the same path – our children are all individuals and we need a better system that celebrates their unique differences and allow them to meet their potential, rather than one which actually penalises and disadvantages them for these.

Summer stats from CEO, Richard Orchard-Rowe

As we start enjoying some sunnier days, we wanted to share an update on everything SOS! Special Educational Needs has been up to this year so far. CEO of the charity, Richard Orchard-Rowe shares this update.

As we move through another busy and impactful year, I want to take a moment to reflect on what we have achieved together and thank everyone who has helped make this possible.

So far this year, we have supported more families than ever before. Our advice centres have welcomed 514 families, an increase of 192 compared with the same period last year. Our helpline team has also seen a significant rise in demand, answering 786 more calls than we did last year. Across all of our services, we have already interacted with 3,863 families, each one seeking support, guidance, and advocacy during what can often be challenging times.

These numbers tell an important story. Behind every call, appointment, and conversation is a child, young person, or family who needed help navigating the education system and accessing the support they deserve. We are proud to stand alongside them and remain committed to ensuring that every child has the opportunity to receive a fair and equitable education.

This year has also seen us continue our campaigning work. We actively supported the Save Our Children's Rights campaign and joined fellow campaigners at the protest in Parliament Square to stand with the SEND community in response to the Government's proposed White Paper. We will continue to raise our voice, challenge inequality, and fight for the rights of children and young people whose needs must not be overlooked.

As we celebrate Volunteers' Week, we also want to recognise the incredible contribution made by our volunteers. Quite simply, we could not achieve what we do without them. Whether supporting families directly, answering calls, helping at events, contributing behind the scenes, or lending their expertise in countless other ways, our volunteers are at the heart of our charity.

To every volunteer who gives their time, energy, skills, and compassion to support our mission: thank you. Your dedication makes a real and lasting difference to the lives of thousands of families every year, and we are enormously grateful for everything you do.

Together, we will continue to champion the rights of children and young people, support families when they need us most, and work towards a future where every child has access to the education and opportunities they deserve.

Educational Psychologist Dr Stephanie Satariano Talks Parental Intuition, the SEND Landscape and Her Own Experience as a Mum of Two

This month SOS!SEN spoke to Dr Stephanie Satariano, a chartered Educational Psychologist (Neuropsychology). Stephanie has a special interest in psychological and neuropsychological assessments of children with a range of neurological and neurodevelopmental problems.

Her Doctoral research was in gifted and talented pupils and how to maximise their educational attainment. Stephanie also has a strong interest in early intervention and working with children in the early years, so as to maximise their development long term. This is through direct work with the children as well as through supporting parents and school.

Stephanie has already supported SOS!SEN as a keynote speaker at their recent team day, so we're very grateful to her for taking the time to answer some of our questions - thank you Stephanie! Check out her LinkedIn here.

You’ve supported families through EHC needs assessments and SEND tribunals. What systemic challenges do you see most often, and what changes would make the biggest difference?

Having personally supported a significant number of families through the often-complex journey of securing appropriate special educational needs (SEN) provision, and having consulted with close professional colleagues, including Educational Psychologists and other SEN specialists, I can attest to the profound difficulty in isolating a single "biggest challenge." The landscape is riddled with obstacles, creating a multi-faceted problem.

However, after years of observation and direct involvement, a core issue consistently emerges: the breakdown of effective communication.

In my view, a significant number of the frustrations, delays, and ultimately, the disputes that escalate to the tribunal level, are rooted in a fundamental lack of meaningful dialogue and relationship-building between Local Authority (LA) professionals and families.

If LA professionals were afforded the necessary time, resources, and institutional support to genuinely invest in building stronger, more collaborative relationships with families and to understand their lived experience, I feel that the entire process would be different. When both parties feel heard, the collaborative creation of an Education, Health, and Care Plan (EHCP) becomes possible—a plan that genuinely meets the young person's needs while remaining within the practical capabilities of the Local Authority to uphold.

Crucially, establishing this communicative and collaborative foundation would dramatically reduce the reliance on the costly, emotionally draining, and time-consuming tribunal process. Preventing escalation is not just a benefit to the family's well-being, but a significant strategic and financial gain for the Local Authority, allowing resources to be redirected from legal battles back into frontline provision. It will also reduce pressure on families, which is ultimately in the young person’s best interest. 

How do you ensure that children’s voices remain central, especially in complex medical or educational cases?

Hearing the young person's voice is often the most challenging aspect of my work. It's a persistent difficulty, as some children, exhausted by meeting numerous professionals, are reluctant to speak to me. I respect this reluctance, viewing their non-engagement as a valid form of communication that speaks to the pressure and strain they are experiencing. Moreover, meeting a new person can be overwhelming, and they just can’t engage. Some young people prefer to email their views at a later time, which can be really helpful.

My general approach in meetings is to keep the focus entirely on the young person. This means no discussion about them while they are present, and never making them wait outside. I maintain full transparency and honesty, assuring them they are in control and do not have to participate in any activity. In the clinic, I work hard to create a comfortable environment, enabling them to relax and "unmask" as much as possible.

To ensure their voice is truly heard, I triangulate information from multiple sources: parents' perspectives, school observations, the views of other professionals, and all relevant documentation.

Parents often worry about whether they’re “overreacting” or “missing something”. What signs suggest it’s time to seek a psychological or neurodevelopmental assessment?

I cannot stress enough the importance of parental intuition. As a parent, you are the world's leading expert on your own child. You have a unique, 24/7 perspective, observing them across countless contexts and environments—at home, with friends, during moments of triumph, and periods of challenge. You see all their different sides, their unique personalities, and the subtle shifts in their behaviour that an external professional might miss.

This deep, intimate knowledge means that if you have an persistent feeling, a persistent whisper of intuition, that something isn't quite right with your child's emotional wellbeing, behaviour, or development, it should not be dismissed. Please, trust that feeling. It is often the most reliable early warning system you have.

Often, the simple act of having an initial conversation with a qualified professional—a child psychologist or psychotherapist—can be profoundly helpful. This conversation provides invaluable clarity. We can help you process what you are seeing, normalise certain experiences, identify underlying factors, and, crucially, help you establish a constructive, tailored action plan. This plan might involve simple home-based strategies, or it may suggest a pathway for further assessment or support. The goal is always to empower you to support your child effectively and collaboratively.

What are the biggest myths you encounter about autism, ADHD, learning difficulties, or neuropsychological conditions?

It is a common, though deeply misleading, sentiment to hear phrases like, "Everyone has something," or "Everyone is a little bit on the spectrum." 

No, everyone is not.

While these statements are often made with the intention of fostering inclusion or minimising the perceived stigma associated with neurodevelopmental differences and mental health challenges, they fundamentally misunderstand and diminish the reality of these conditions.

These are not minor personality quirks or occasional difficulties that everyone experiences. These are real, clinically defined conditions that represent significant, persistent, and often complex difficulties. They are characterised by diagnostic criteria established by medical and psychological professionals, not by fleeting moments of stress or unique personal preferences.

When a young person or family is dealing with a condition like Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), severe anxiety, or other mental health or neurodevelopmental differences, they are contending with challenges that have a significant functional impact on their daily lives. To suggest that "everyone is on the spectrum" or "everyone has a bit of that" is a form of diagnostic dilution. It strips the condition of its gravity and implies that the intense support, therapy, and adjustments families require are merely overreactions to normal life struggles.

Crucially, just because you, as an external observer, do not see the difficulties overtly, it does not mean they are not profoundly present. Many families and young people become adept at "masking" or internalizing their struggles, often at great personal cost, in an attempt to fit in or avoid judgment. Families are not "dramatising" their struggles; they are articulating the need for genuine, often specialist, support for a child who is trying to function in a neurotypical world. Acknowledging the reality and depth of these difficulties is the first step toward providing appropriate, compassionate, and effective intervention.

What role can an Educational Psychologist or Neuropsychologist play in supporting a family through a Tribunal?

In my view, our role extends beyond the immediate, obligatory duties outlined in legislation. While there is the clear, statutory requirement to conduct comprehensive assessments and produce reports that directly inform and dictate the provision of support for a child, this only represents one facet of our work.

I believe an equally, if not more, vital component of our practice lies in the educational and empowering support we provide to parents. It is critical that we focus on really helping parents to achieve a deep and nuanced understanding of what support is truly necessary, why it is required, and, crucially, how to implement it effectively to best support their child's development and well-being.

One of the biggest and most essential roles I feel I play is in preventing the trap of over-provision and therapeutic saturation. There is a common misconception, often driven by anxiety and a desire to "fix" the problem quickly, that more therapies, more intervention, and more structured support automatically leads to better outcomes. In reality, this is frequently counterproductive. Children, particularly those with complex needs, are highly susceptible to burnout. Their cognitive resources are already heavily taxed by navigating a world not always built for them. Therefore, we must advocate for balance. Kids fundamentally need time to just be kids, to relax, to engage in unstructured play, and to pursue their own interests without an agenda or a therapeutic goal attached. This ‘downtime’ is not wasted time; it is essential for consolidating learning, fostering natural social interaction, developing autonomy, and simply allowing their nervous system to regulate. I help parents to embrace a strategic, quality-over-quantity approach, ensuring that the child’s schedule supports their development without sacrificing their childhood or well-being.

What changes would you most like to see in the SEND landscape to make life easier for families?

The most immediate and obvious barrier is securing adequate funding, which impacts the breadth and quality of services available to families.

However, beyond the purely financial constraints, a crucial factor is the quality of understanding and subsequent communication between families and the statutory professionals managing their child's case, particularly their Special Educational Needs and Disabilities (SEND) case workers. This relationship is incredibly significant. I have observed a profound difference in a family's overall stress levels and their ability to navigate the complex system when they have established a strong, positive, and communicative working relationship with their assigned SEND case officer. A constructive relationship built on mutual respect and clarity can transform the experience from an adversarial battle into a collaborative partnership focused squarely on the child's needs and best outcomes. This positive dynamic can significantly reduce the emotional burden on parents, leading to more efficient processes and timely support delivery.

Has understanding attachment, behaviour, or emotional regulation professionally changed how you respond to challenging moments as a parent?

Ha! That is a good one. I like to think my professional life and training has given me some kind of parenting superpower, and I truly strive every day to focus on the core principles of my work: building a strong, secure attachment with my boys and consistently supporting their journey toward emotional regulation. I preach about being the 'emotion coach' and the 'secure base,' and I genuinely aim to embody that.

However, I am human. I carry my own emotional baggage, my own unique triggers, and the simple reality of exhaustion and stress. Consequently, I very often find myself falling short. I do not always handle those common, heightened family situations—the meltdowns, the sibling spats, the defiance—with the calm, measured, and perfectly attuned response I know intellectually is best.

It's a running joke I have with myself: I can almost always see my 'psychologist self' standing over me during these moments, looking down with a sharp, judgmental 'tutting' and a palpable shaking of the head, essentially saying, "You know better, Stephanie." In that instant, I am acutely aware that my response was far from the ideal, evidence-based approach I advocate for in my practice.

The critical difference, though, lies in what happens next. While I may not nail the initial reaction, I work incredibly hard on the principle of rupture and repair. I try to return to the situation once everyone is calm, acknowledging my mistake, apologising clearly and genuinely ("I am sorry I shouted; that was my big feeling taking over, and it wasn't fair to you"), and then walking them through how we could have both handled the situation better. This commitment to repair is, in my professional opinion, just as vital for a secure attachment as getting it right the first time. It teaches them that mistakes are inevitable, apologies are powerful, and our relationship is resilient enough to withstand conflict.

Do you ever find it difficult to switch off the psychologist in you and simply be “Mum”? How do you manage that balance?

It's hard to say honestly. Both of my sons are incredibly energetic and experience big emotions. My eldest has ADHD, high-level anxiety, and demand avoidant traits (not diagnosed), and is also a high-masker. My youngest, who is still only five, likely also has ADHD. Because of this, they both require parenting that goes above and beyond what is considered "typical."

While my eldest is quite good at letting me know when he's had enough of the "psychologist stuff" and just doesn't want to engage with or discuss emotions, I find my professional skills have become completely internalised (also my youngest quite enjoys the psychobabble!). I genuinely love analysing and understanding human behaviour, and I don't think I can—or want to—separate my professional and personal ways of thinking.

Autistic Speaker, Dean Beadle, Speaks to SOS!SEN About Empowering the Next Generation of Autistic Young People to Never View Themselves Through a Deficit Lens

In this candid conversation, autistic speaker, inset trainer and singer, Dean Beadle, joins us to share his lived experience, challenge misconceptions, and reflect on what true inclusion should look and feel like for autistic young people and their families. His insight is as grounded as it is uplifting - a reminder of why listening to autistic voices matters.

Dean has spent over two decades speaking across the UK and abroad about his experiences. He is passionate about challenging the barriers that exist in society for neurodivergent people, and is patron of three autism-related charities. We're delighted to feature this interview, so a big thank you to Dean.

You can follow Dean on his Instagram here - deanbeadlespeaker and his TikTok here - dean.beadle

When you compare your own school experience to what you see in schools today, what has genuinely improved — and what hasn’t shifted nearly enough?

Initially in primary school I was seen through a very behaviourist lens and was suspended more times than you can count. Mum had to battle to get my needs understood and met. Sadly, thirty years on, I’m still hearing too many parents tell me that they are coming up against the same lack of understanding in mainstream schools. In that sense, we haven’t made nearly enough progress in making schools fully inclusive and accessible. Behaviourist approaches are a worrying trend in some specialist provisions too. With that said, I’m heartened by how many brilliant teachers and school leaders I work with who are genuinely invested in getting it right for autistic learners. I get to see so much excellent practice in both mainstream and specialist settings. I’m encouraged that autistic advocates have ever bigger platforms to challenge attitudes and create change. We are empowering the next generation of autistic young people to never view themselves through a deficit lens. All of that gives me hope.

You’ve spoken about masking and anxiety in school. How did those pressures show up for you day‑to‑day as a child or teenager?

When I joined secondary school, I very much remember feeling that I needed to keep a low profile. In order to survive, I felt I had to mask and blend in. I remember swallowing down anxiety. I was in survival mode.

As I often explain in my inset training, just because you can’t see the anxiety and distress on the surface doesn’t mean it isn’t there. The child may well be bottling all that up until they can get to a space where they feel safe to be their authentic selves. I’m forever saying to teachers: “just because you can’t see distress, doesn’t mean it isn’t there. Believe what parents tell you.”

What do you see as the most harmful myths about autistic pupils that still influence school policy or practice?

How long have you got!? There are so many- and this situation is amplified by so-called ‘experts’ spouting ableist nonsense on their platforms and in the press. But in terms of harmful myths in a schools context, I’d say the most current one is the notion that many autistic learners are “choosing” not to attend school. What a load of old rubbish!

There’s no choice about it. The reality is they are utterly burnt out from inaccessible and often hostile environments. Its high time we realised it’s not a case of ‘wont’ it’s a case of ‘can’t’. Local authorities must realise that the goal shouldn’t be about ‘getting them back through the door’, but acknowledging and addressing the system-wide accessibility issues that traumatised those learners in the first place. This starts from properly listening to what autistic young people and their parents are saying.

How do you help today’s educators reframe behaviours they might label as “challenging” or “defiant”?

I’ve spent my career working with schools staff and supporting them to realise that instead of focussing on behaviour, we must focus on needs. Instead of seeing aggression, anger and violence, we must reframe that as distress, overwhelm and dysregulation. Our focus must be on shifting the environment to meet needs.

How do you help schools move from “awareness” to genuine inclusion that changes autistic pupils’ daily lives?

I’ve spent a lot of this past year speaking at inclusion conferences, and a key message in my keynotes has been that inclusion isn’t a good enough aim anymore. I think we need to shift our objective from inclusion towards fostering a sense of belonging. Do our autistic learners feel they truly belong in the schools they attend? That’s the question we need to be asking.

What do you say to educators who feel overwhelmed or afraid of “getting it wrong” when supporting autistic learners?

Listen to your learners. Believe what they tell you. Invest in building trusted relationships with them and their parents. Everything boils down to relationships. Trusted relationships are the foundation for everything else. Be brave and be the best ally to your learners and their families, because they really need you.

What message do you want parents to hear about supporting autistic children who come home exhausted, dysregulated, or shut down after school?

Give your child time and space to recover and regulate. Needing to be alone does not mean a rejection of the family- they just need time to recover from the sensory and social onslaught of the school day. Reduce demands and expectations and let home be a place where they can rebuild their spoons. Be the safe space.

If you could speak directly to parents who are in the thick of EHCP battles, exclusions, or school-based trauma, what would you want them to take away from your story?

At a time when so many others were judgemental, hostile and downright ableist towards me, my mum was my biggest champion, and she didn’t rest until she changed people’s view of me. I owe my mum everything for that. Your kids know that you’re in their corner- and that means the world.

Initial Reflections on the Government’s SEND White Paper

A message this month from the CEO of SOS! Special Educational Needs, Richard Orchard-Rowe and the charity's Legal Officer, Eleanor Wright, about the recently released Government White Paper.

The Government has now published its long-awaited SEND White Paper. Many families, professionals and organisations have been waiting a considerable time for clarity about the direction of future reforms, and the publication marks the beginning of an important period of scrutiny and debate.

At SOS!SEN, we are currently reviewing the detail of the proposals. In order to do this carefully and responsibly, we have established a dedicated working group to go through the White Paper in depth and consider what the proposals may mean for children and young people with SEND, their families, and the professionals who support them.

As part of this process, we will also be hosting a webinar in the coming weeks. This event will include a panel of parents who will be sharing their views and reflecting on what the proposals could mean in practice. Hearing directly from families is essential, and we want to ensure their perspectives remain central to the conversation.

While we are still analysing the full detail, our initial reading of the White Paper raises several serious concerns.

First, there appears to be a shift in emphasis that distances local authorities from responsibility for the challenges within the system, while placing greater expectations on schools to manage increasingly complex needs. Schools are already under significant pressure, and we are concerned that these proposals could further strain the system. In particular, there is a real risk that increased pressures could contribute to the loss of experienced and dedicated teaching staff at a time when they are needed most.

We are also worried that the proposed approach may create a more adversarial experience for parents. Many families already find the system difficult to navigate, and any reforms should aim to rebuild trust and cooperation rather than deepen conflict.

Another concern is that the voice of families appears to be increasingly absent from the proposed reforms. Parents and carers bring vital knowledge and experience about their children, and meaningful partnership with families must remain at the heart of any effective SEND system.

Most concerning of all is the direction of travel regarding legal protections for children and young people with SEND. Despite extensive lobbying from families and organisations across the sector, the proposals appear to move towards removing some of the legal rights that currently protect children with SEND. These rights have long provided an essential safeguard for families when support is not delivered as it should be.

SOS!SEN will continue to speak out about these issues. We are also working alongside the Save Our Children’s Rights campaign to ensure that the voices of families are heard and that the Government fully understands the potential consequences of these proposals.

There are two key things we want families to know at this stage.

First, nothing has changed today. The current law remains in place, and the rights of children and young people with SEND continue exactly as they did before the publication of the White Paper.

Second, we are now entering a consultation period. This is a crucial opportunity for families, young people and professionals to share their views. Your voices matter, and collective feedback will play an important role in shaping what happens next.

We will continue to keep our community updated as we work through the proposals in detail and as further opportunities arise to contribute to the consultation. In the meantime, we encourage families to stay engaged, take part in discussions, and add their voices to this important debate.