My mother always said that I was so good at getting ready for school. I am in year 9 in secondary school, my alarm goes off (which almost sends me into cardiac arrest instantly upon waking… so before I have even opened my eyes, my nervous system is on fire) and I get up. I start my routine and straighten my hair, put my uniform on and start putting on make up. I didn’t have the same eyeshadows as the other girls but my little brother had face paint sticks so I used those and prayed no one at school would find out. After some cereal I would pick up my lunchbox, put on my coat and shoes and begin the 30 minute walk to school by myself.
Once there I would wait patiently to be let into the classroom and sit quietly looking at my timetable and talking to the person next to me. I would attend my lessons. I was quiet and compliant. I did my homework and achieved respectable grades. I was polite and calm, and even sometimes pretty funny, if I do say so myself.
Doesn’t sound too much like a PDA pre-teen school experience so far, does it?
When I arrived home after what felt like the longest uphill walk in the world, I would change my clothes and eat a snack before doing my homework quietly in my room. I would spend a lot of time in my room by myself. I had a typewriter and I wrote long, complex stories and poems. I would spend hours doing remarkable pencil drawings that were exact replicas of the picture I had copied. I would read. I would write in my diary. We had family dinners around the dining table with candles and my mothers Latino music in the background (I am half Uruguayan) and our foreign exchange students would sit with us. We were encouraged to speak to them as much as possible to support their English learning. After dinner and a little TV I was exhausted and would go to bed without any trouble.
So what’s the problem?
The problem was that everyone, including me, assumed that because I was doing it, I was coping with it.
Nobody was asking what it cost me to get through each day. Nobody noticed that I spent most of my free time alone recovering. Nobody questioned why I was permanently exhausted or why so much of my energy went into simply getting through the demands of school. There were no dramatic meltdowns, no school refusal and no obvious signs that I was struggling. I attended. I achieved. I complied.
It wasn’t until much later that I began to understand the impact this had had on me. By the age of 21, I had developed significant anxiety and depression. I was prescribed antidepressants and attended eighteen weeks of therapy. Throughout my teens and early adulthood, I struggled with emotional regulation and periods of intense anger that often seemed to come from nowhere. Looking back now, I wonder how much of that was actually the result of years spent pushing myself beyond what my nervous system could comfortably tolerate.
The adults around me saw a child who was coping because they were looking at my attendance, my behaviour and my grades. What they couldn’t see was the amount of energy it took to maintain them. I wasn’t thriving. I was surviving. The distinction is important because there are many children sitting in classrooms today who look exactly as I did.
So what do I do as a parent?
One of the most difficult aspects of parenting a PDA child is learning to trust what you can see, even when it appears to conflict with what everyone else is telling you.
Many parents find themselves caught between two very different narratives. At school, their child is described as capable, settled, polite, hardworking or even thriving. At home, however, they see a child who is exhausted, anxious, withdrawn, irritable, overwhelmed or increasingly unable to cope with everyday life. The discrepancy can leave parents questioning themselves. If school says everything is fine, surely it must be? Yet the child in front of them tells a different story.
Part of the difficulty lies in the way we tend to define coping. Educational systems understandably place considerable emphasis on attendance, behaviour and academic progress. These are measurable outcomes and they are often used as indicators of wellbeing. The problem is that none of them tell us how much effort a child is expending in order to achieve them. A child may be attending every day, meeting academic expectations and causing no concern in the classroom whilst simultaneously operating at the very edge of their emotional capacity.
This distinction is particularly important when considering children with a Pathological Demand Avoidance profile. Whilst every PDA child is different, anxiety is widely understood to play a central role in the presentation (O’Nions et al., 2014). School environments are full of demands that many children take for granted: transitions, social expectations, timetables, instructions, noise, uncertainty and constant evaluation. For some PDA children, navigating these demands requires a level of effort that remains almost entirely invisible to the adults around them.
One of the reasons this can be so difficult to identify is that many PDA children become highly skilled at masking. The concept of masking has been explored extensively within autism research and refers to the conscious or unconscious suppression of natural responses in order to fit social expectations (Hull et al., 2017). Although masking is not unique to PDA, many PDA children describe spending large amounts of energy monitoring themselves, controlling their reactions and attempting to appear as though they are ‘coping’.
The challenge is that successful masking often looks exactly like successful adjustment.
When professionals observe a child who is managing to remain in class, participate in activities and complete work, it is understandable that they conclude the child is coping. What they may not see is the amount of emotional labour required to maintain that presentation. Research increasingly suggests that prolonged masking can be associated with increased anxiety, depression, exhaustion and poorer mental health outcomes (Hull et al., 2021). In other words, the very behaviours that reassure adults can sometimes conceal significant distress.
Parents are often told to look for meltdowns as evidence that a child is struggling. Whilst meltdowns can certainly be one indicator, they are far from the only one. In fact, some of the children who are struggling the most never have a dramatic collapse at all.
The concept of restraint collapse is familiar to many autistic and PDA families. It describes the release of emotional tension once a child reaches a place where they feel safe enough to let down their guard. A child who has spent all day suppressing anxiety, tolerating sensory discomfort and meeting expectations may return home and immediately appear dysregulated. They may cry, shout, argue or become unable to engage in even the simplest requests. To an outsider, it can appear as though school is going well and home is where the difficulties lie. Parents often recognise the opposite. Home is simply the place where the child no longer has the energy to continue holding everything together.
Yet restraint collapse does not always look like an explosion.
This is something I wish more people understood because I did not experience restraint collapse in the way it is typically described. As a PDA child, I internalised almost everything. There were no dramatic outbursts. No obvious signs that I had reached my limit. Instead, my distress appeared in quieter ways. I withdrew into books. I spent increasing amounts of time alone. I became exhausted. I appeared compliant. Looking back, many adults probably assumed I was coping because I was not causing concern. The reality was very different.
In the 12 years I spent in the classroom, I met many children who seem to follow a similar pattern. Rather than externalising their distress, they absorb it. Their anxiety becomes quieter rather than louder. They may become increasingly withdrawn, lose interest in activities they once enjoyed, seek more time alone or appear emotionally flat. Some become chronic people-pleasers, desperately attempting to avoid conflict or disappointment. Others seem unusually mature, sensible, emotionally literate, or self-sufficient for their age. These characteristics are often praised, yet they can sometimes represent a child who has learned that expressing their distress feels less safe than containing it.
What about the body?
Another commonly overlooked sign is the presence of physical symptoms. Anxiety is not simply an emotional experience. It is a physiological one. Research has consistently demonstrated links between emotional distress and physical symptoms in children, including headaches, stomach aches, nausea, fatigue and sleep difficulties (Garralda, 2010). Many parents find themselves trapped in an endless cycle of medical appointments, attempting to identify the cause of recurring physical complaints. Sometimes there is an underlying medical explanation. Sometimes the body is expressing what the child cannot yet articulate.
One of the most concerning consequences of prolonged stress is burnout. Although research into autistic burnout remains relatively new, there is growing recognition that chronic efforts to function in environments that exceed a person’s capacity can eventually lead to profound exhaustion and loss of functioning (Raymaker et al., 2020). Parents may notice a gradual reduction in their child’s ability to manage demands that were previously achievable. Skills may appear to regress. Tolerance for sensory input may decrease. Everyday activities may become increasingly difficult. What can appear to be defiance, laziness or lack of motivation is often something very different. A child who has been surviving for too long may simply have reached the limits of what their nervous system can sustain.
Perhaps the most important message for parents is that academic success and emotional wellbeing are not interchangeable. A child can achieve highly whilst experiencing significant distress. They can receive glowing reports whilst becoming increasingly anxious. They can attend school every day whilst quietly moving closer to burnout. The question is not simply whether a child can do what is being asked of them. The question is what it costs them to do it.
For parents of PDA children, this can require a change in perspective. Rather than focusing solely on attendance, attainment or behaviour, it can be helpful to consider the child’s overall quality of life. Do they have energy left for the things they enjoy? Are they able to relax? Are they maintaining friendships and family relationships? Do they seem generally content within themselves? Or does every ounce of their energy appear to be consumed by getting through the school day?
Many PDA children spend years convincing the adults around them that they are coping. Some do so through compliance. Some through perfectionism. Some through masking. Some through silence. The tragedy is that the quieter signs of distress are often the easiest to overlook.
As parents, we are sometimes the only people who see the whole picture. We see the child before school, after school, at weekends and during holidays. We notice the changes that are too subtle to appear in reports or data. We witness the cost.
If your instincts tell you that your child is struggling, it is worth paying attention to that feeling. Children do not need to be failing academically before they deserve support. They do not need to be refusing school before their distress becomes real. By the time a child can no longer cope, they have often been trying to cope for far longer than anyone realised.
Moving forward…
If reading this article has left you wondering whether school is currently the right fit for your child, it may be reassuring to know that there are other educational pathways available. Home education is not the right choice for every family, but for some children, particularly those experiencing significant anxiety, burnout or school-based distress, it can provide the space needed to recover, reconnect with learning and rebuild confidence.
For parents of children aged 2–5 who are exploring home education, I have created a range of themed EYFS Home Education Packs designed to provide a full month of learning through play, exploration and child-led activities. Each pack costs just £5 and includes enough ideas and activities to support an entire month’s learning at home. Themes range from maps and adventure to family, harvest, spring and many more, making it easy to find something that sparks your child’s interests.
You can browse the full range here: https://www.sendinmama.com/homeedsupport
If you’d like to see an example before purchasing, you can view this month’s pack here: https://www.sendinmama.com/homeedjune
Whether you are actively considering home education or simply curious about what learning outside of school can look like, it is well worth having a browse. Sometimes knowing that there are other options available can make a challenging situation feel a little less overwhelming.
With Love,
SENDinMama
Buy the poor girl a dishwasher fund...
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The Invisible PDA Child
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May 8
So, I started to write this thing as I normally do, gathering my reading and sources, building my reference list and structuring the readers ‘learning’ so that it scaffolds logically and I can be sure they can come away from this article having learned about this week’s subject through information and real life contexts.
Cage, E. and Troxell-Whitman, Z. (2019) ‘Understanding the reasons, contexts and costs of camouflaging for autistic adults’, Journal of Autism and Developmental Disorders, 49(5), pp. 1899–1911.
Cook, A., Ogden, J. and Winstone, N. (2024) ‘Friendship motivations, challenges and the role of masking for autistic girls and boys in mainstream education’, Autism, 28(2), pp. 423–437.
Garralda, M.E. (2010) ‘Unexplained physical complaints’, Paediatrics and Child Health, 20(8), pp. 366–372.
Hull, L., Petrides, K.V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.C. and Mandy, W. (2017) ‘Putting on my best normal: Social camouflaging in adults with autism spectrum conditions’, Journal of Autism and Developmental Disorders, 47(8), pp. 2519–2534.
Hull, L., Levy, L., Lai, M.C., Petrides, K.V., Baron-Cohen, S., Allison, C., Smith, P. and Mandy, W. (2021) ‘Is social camouflaging associated with anxiety and depression in autistic adults?’, Molecular Autism, 12(13).
Kildahl, A.N., Helverschou, S.B., Bakken, T. and Oddli, H.W. (2021) ‘Identification of post-traumatic stress disorder in individuals with autism spectrum disorder: A systematic review’, Review Journal of Autism and Developmental Disorders, 8(1), pp. 1–19.
Mantzalas, J., Richdale, A.L., Adikari, A., Lowe, J. and Dissanayake, C. (2022) ‘What is autistic burnout? A thematic analysis of posts on two online platforms’, Autism in Adulthood, 4(1), pp. 52–65.
Milton, D. (2017) ‘A mismatch of salience: Explorations of the nature of autism from theory to practice’, in Woods, R. (ed.) Exploring the Spectrum of Autism. Basingstoke: Palgrave Macmillan, pp. 109–124.
National Autistic Society (2024) Autistic Burnout. London: National Autistic Society.
O’Nions, E., Christie, P., Gould, J., Viding, E. and Happé, F. (2014) ‘Development of the Extreme Demand Avoidance Questionnaire (EDA-Q): Preliminary observations on a trait measure for Pathological Demand Avoidance’, Journal of Child Psychology and Psychiatry, 55(7), pp. 758–768.
Preece, D. and Howley, M. (2018) ‘An approach to supporting pupils with Pathological Demand Avoidance in educational settings’, Good Autism Practice, 19(1), pp. 45–58.
Raymaker, D.M., Teo, A.R., Steckler, N.A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S.K., Hunter, M., Joyce, A. and Nicolaidis, C. (2020) ‘Having all of your internal resources exhausted beyond measure and being left with no clean-up crew: Defining autistic burnout’, Autism in Adulthood, 2(2), pp. 132–143.
Riley, G., Cornish, D. and Hare, D.J. (2019) Pathological Demand Avoidance Syndrome: Myths, Misperceptions and Realities. London: Jessica Kingsley Publishers.
Treisman, K. (2021) A Therapeutic Treasure Box for Working with Children and Adolescents with Developmental Trauma. 2nd edn. London: Jessica Kingsley Publishers.
West Sussex County Council (2022) Emotionally Based School Avoidance (EBSA): Guidance for Schools and Professionals. Chichester: West Sussex County Council.
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