Easy one day, impossible another.

Why is a child or young person able to access their full and best capabilities one day, but on other days seemingly completely lose access to the same capability?

An important topic discussed in 27 webinars, across lived experiences and a range of professional expertise, at The PDA Space Summit.

Rather than simply asking, “We know they can do this, so why aren't they?”

The PDA Space Summit 2026 invites us to become curious about a different question: “What might be affecting their capacity right now?”

Capacity for school attendance.

Children and young people experience significant barriers to school attendance, and families can be judged or fined unfairly due to a lack of understanding of autism in schools and local authorities. Rt Hon Sir Julian Smith KCB CBE MP (Skipton and Ripon) wants to ensure the register of children not at school is implemented with sensitivity and informed by data of special educational needs and disabilities (SEND).

“I have urged Ministers to ensure that measures aimed at improving school attendance do not inadvertently penalise families who are already doing everything they can to support their children. I have stressed that clearer, firmer rules around registration and attendance, while well-intentioned, can cause additional trauma for autistic pupils and risk increasing school refusal.”

On 14 September, during Education Questions in the House of Commons, Sir Julian Smith called on Minister for School Standards Georgia Gould for awareness of PDA in schools: “the issue of differing profiles is really important; pupils with a pathological demand avoidance profile of autism will require a totally different strategy from staff at the reception desk and teachers to get them into school and get them engaged with education. Will [Minister for School Standards] keep pressing the Department on teacher training to really focus on these different profiles and the responses to them, and can she confirm that she is also working with the Department of Health and Social Care on the independent prevalence review?” (1)

Minister Georgia Gould confirmed she is working closely with the independent prevalence review and “on PDA especially, I have heard similar things from many parents. We have a national independent panel… I encourage Members to come along and talk to them directly. We have asked them to look at PDA because there is not a strong evidence base, which has been asked for. As well as the teacher training, which is a huge priority, these new experts—educational psychologists, occupational therapists—will provide support for teachers in classrooms.”

Sally Cat, PDA adult author of The Insider Guide to PDA and PDA by PDAers, speaks at The PDA Space Summit - Capacity and Internalised PDA.

Internalising PDA people can contain mounting stress so others have no idea, and even signs of incapacitation - such as giving up projects, self-harm or retreating into depressive states - can be attributed to other causes. Sally offers insight into how internalised PDA affects people beneath the surface and guidance on what may help PDA people break out of incapacitation.

Rob Wakeling, the Bow Tie Teacher, speaks at The PDA Space Summit - Capacity Before Capability: Lowering The Demand So A PDA Learner Can Thrive.

Maths tutor Rob works with PDA students online as Bow Tie Teacher, designed to reduce interpersonal demand: the learner sets the pace, chooses the topic, and the work is framed as a role or challenge rather than instruction. He walks through what this looks like in practice: declarative language, collaboration, and self-paced tools that take the demand trigger out of the equation.

Kellie Vvind lists what helped her daughter go from hardly attending school to choosing to go back full time: starting with completely taking her out of school in the first place, to helping her notice signals in her body when she’s nervous, overwhelmed or uncomfortable and advocate for herself. That’s been a hard one. Also, the school environment matters, particularly things like the layout, the lights, the rules and how the day works.

“There wasn't ONE thing that got her back into school. It was lots and lots of little things that helped her get to a place where school feels doable again.”

What matters for autistic people.

On 14 September, the National Autistic Society (UK’s largest autism charity) stated definitively, for the first time, that autism is genetic. The conclusions are based on a robust, comprehensive review of all quality evidence and the answer is clear: you’re born autistic, you’re autistic for life, autism runs in families, but it is unknown how genes combine to make a person autistic. (2)

The news shifts us away from unsubstantiated claims on what causes autism (paracetamol? lol, no) and towards a focus on what really matters to autistic people and families.

Dr Judith Brown, Head of Autism Knowledge and Expertise, writes: “Autistic people and their families want future research to focus on the priorities of autistic people, rather than 'treatments’ or ‘cures’. There is no ‘cure’ for autism and most autistic people (and many others) believe there is no need for a cure or for any kind of therapy to ‘treat’ autism. This does not mean that autistic people do not face challenges, but with the right support in place, they can live fulfilling and happy lives.”

“My sincere hope, plea and wish is that people read our advice and guidance, take on board the evidence, and we can move to focusing on what really matters and will make a difference for autistic people. This must be focused, sustained changes across education, employment, health and social care, improved assessment and diagnostic services and better mental health support to create a society that truly works for autistic people.”

Cathie Long, independent social worker for over 30 years in health and social care, speaks at The PDA Space Summit - When difference is misread as risk: autism, PDA and safeguarding.

Parents of children with a PDA profile frequently describe feeling misunderstood by the very systems intended to support them. Conversations about their child’s needs can become conversations about their parenting; advocacy, adaptations, and emotional distress can be interpreted as indicators of concern rather than responses to living with a highly anxious child. Through practical examples and research-informed discussion, Cathie invites parents and professionals to consider how curiosity, contextual understanding and neurodiversity-affirming practice leads to more accurate assessments, stronger relationships and better outcomes.

Libby Hill, consultant speech and language therapist for over 30 years, specialises in autistic children, those with PDA and selective mutism, speaks at The PDA Space Summit - my child can talk for England, some days he doesn’t say a word, at other times he just growls.

Libby explains reasons for this behaviour and looks at the dynamic nature of language processing in PDA-ers and why a dynamic assessment has to be part of the speech, language and communication assessment.

Giggs raps school doors for kids with neurodivergence & special needs

London rap star and OMG Ambassador Giggs has co-founded a special needs school and assessment centre for neurodivergent kids in Kent, UK with OMG Foundation CEO Jamal Miah.

The assessment centre, employing educational psychologists, occupational therapists and speech-and-language specialists, opened this month. The school is due to open in January.

Giggs, 45, is diagnosed autistic and has four children (one born this month; all three older kids are autistic). The difficulties Giggs had getting crucial assessments for his children was the primary motivation when he decided to launch St James House, a secondary school for students with special educational needs and disabilities (SEND) and those in alternative provision.

“I’d been fighting for my seven-year-old son, Israel,” Giggs says. “He’s autistic but the system was failing him. We couldn’t get him diagnosed and he wasn’t getting the support and assessments he needed. It was a mess. I thought, well, I’ve got to do something.”

They’re on the way to raising the £930,000 needed to begin operations after their first flagship Every Young Mind Matters Gala in July, where celebrities including Damien Hirst, Stephen Fry, Ed Sheeran and Robbie Williams contributed to a high-impact auction hosted by Giggs, a passionate advocate for SEND, mental health and inclusion.

He wants to help neurodivergent kids reach their potential and parents struggling with the difficult SEND system. OMG Foundation already runs one school in London. When Miah and Giggs decided to start one in Kent, Giggs insisted it needed an assessment centre built in. “Because a lot of parents don’t know how to get EHCPs,” says Miah. “Until their kids have got those, it’s hard to do anything for them.”

Dr Ross W. Greene, originator of Collaborative & Proactive Solutions (CPS) in his books (The Explosive Child, Raising Human Beings, Lost at School & Lost and Found) and Lives in the Balance, speaks at The PDA Space Summit - Building Capability Starts With Understanding Capacity

Ross explores why schools can be responding once a young person is already distressed, rather than proactively identifying and addressing the problems getting in their way. His Collaborative and Proactive Solutions approach asks professionals to identify expectations a young person has difficulty meeting and solve problems collaboratively, before the heat of the moment.

Christina Keeble, neuro-affirming teacher, consultant, speaker & researcher, speaks at The PDA Space Summit - shifting spaces of safety: growing capacity

This webinar explains a visual model and tool Christina created to support PDAers (and those who support them) to understand how capacity can be impacted by shifting spaces of safety and how to recognise and be responsive to those differing states of capacity and how to support the PDAer to grow capacity in a safe and neuro-affirming way. This will benefit anyone who supports a PDAer including parents, carers, teachers, educators, therapists, or is a PDAer themselves.

PDA Space Summit 2026

The PDA Space Summit 2026 features voices from across the PDA community - lived experience and a range of professional perspectives - speakers explore what affects a neurodivergent person's capacity in any given moment, and why understanding this can change the way we interpret behaviour, learning, communication and participation.

Conversations explore fluctuating and hidden capacity, alongside the impact of nervous system regulation, sensory processing and sensory load, fatigue, burnout, stress, demands, expectations and the environment.

They also look at communication differences, relationships and connection, autonomy, regulation and co-regulation, and how flexible, compassionate support can help people access more of what they are capable of.

In the context of family, home and environment, we can start to understand what influences the fluctuating capacity that marks autism and the PDA profile, and what affects a child’s abilities. Especially for school; a child's ability to learn, communicate, manage transitions, cope with sensory experiences, meet expectations or simply get through the school day - or face the day in the first place - can change significantly depending on the capacity available to them.

Whether a family understands PDA well or they’re just beginning to explore neurodivergence, or just wonders why a child seems to cope well in some situations but struggles profoundly in others, many of the talks and conversations will be relevant and supportive for families of neurodivergent children and young people more widely.

And, me.

Why am I, an autistic adult, able to focus and write and think and create well one day, but on other days completely lose access to all of it?

IT IS SO UPSETTING.

A joy one day, a crying mess of frustration another.

Case in point, this Needle/Hay email is delivered today... NOT the 21st as promised.

An important topic discussed across the 27 webinars of The PDA Space Summit.

REFERENCES

Dates and times for all the talks I mentioned, and how to book: The PDA Space Summit 2026 is free to attend live. It’s also the last (7th) online summit, let’s make it count : )

(1) Watch Julian's question and the Minister's answer.

(2) 99 sources, including 83 research papers, were analysed by the National Autistic Society research team. More: what causes autism?

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