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
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.
