Educational Psychologist Dr Kirstie Rees looks at freeze behaviours in young people with autism.
I stood by the door, observing. Andrew was sitting at the snack table, his left hand clutching a packet of crisps. His right hand held a crisp, just in front of his lips. Andrew didn’t move. The crisp stayed suspended in mid-air.
It’s happening more often, his teacher noted, referring to Andrew’s growing difficulty with transitions throughout the school day. At lunch, during snack time, when we’re moving between activities—and even when he’s doing things he usually loves. He’ll start his favourite jigsaw puzzle, lay out all the pieces, and then stop abruptly, she explained, or he’ll head toward the sensory room, make it to the door, and then halt. Sometimes, he stays like that for a long time.
Andrew was a 16-year-old student at a school for pupils with special educational needs. He had a diagnosis of autism and a severe learning disability. Over the years, staff had used various strategies to help him navigate change and make his needs known. For example, when Andrew needed to go to the toilet, he would take the visual of the toilet from the wall next to the door and pass it to a staff member. When he wanted to engage in a preferred activity, he would point to the picture of it in his communication book. Staff used a visual timetable too, and Andrew knew the daily routines well. Despite this, it seemed that every part of the school day was becoming more difficult for him. Even if he started an activity, he would often stop mid-bite, mid-step, or mid-movement.
His teacher was struggling to understand what Andrew’s behaviours were communicating. The strategies that used to work don’t seem to help him any more, she said.
Catatonia and Autism
As an educational psychologist working primarily in special needs schools, I understand how challenging transitions can be for young people with autism. Moving from one place or activity to another often brings significant anticipatory anxiety. There is not always certainty about what will happen next, who will be there, or what the environment will be like. Sensory changes—more movement or noise—can add to the stress, compounded by additional instructions from an adult trying to provide support, such as First, walk down the corridor; then stop at the sensory room door and wait. For many young people with autism, however, any demand placed on them may inadvertently make them feel even more out of control. Overwhelmed by the transition, they may cry or shout, refuse to leave a room, or withdraw from those around them.
Andrew’s response was different. It was as if he often wanted to make the transition or complete the task but was unable to continue what he had started. It’s as though he’s catatonic, his teacher remarked.
When I explored the research in this area, I found several studies highlighting catatonic behaviours in young people with autism (see Further reading). Catatonia in autism is described as a state of psychomotor disturbance and can include motor immobility (like the freeze response we saw in Andrew), stupor (lack of response to surroundings), posturing (holding unusual positions for long periods), and an inability to initiate or complete actions. The research suggests that between ten and twenty percent of people with autism may display some catatonic behaviours at some point. Often, these behaviours become apparent during adolescence.
I was reluctant to use the word catatonic in relation to Andrew, given its psychiatric connotations, which can be misleading, particularly in view of its association with conditions like schizophrenia. The language we use to describe a pupil’s behaviours can shape how they are viewed and how others respond to them. If we began to talk about Andrew being catatonic, there was a risk that those working with him could presume there was something ‘wrong’ with him, potentially leading to them feeling that there was not much that they could do to improve things. It could also dissuade them from carrying out a more holistic assessment to explore what had happened to Andrew, or what was going on around him. Rather than talk about catatonia, I spoke to the class team, and we decided to refer to Andrew’s behaviours as freeze behaviours. This accurately reflected what we were observing and allowed us to focus on understanding and addressing the underlying causes, rather than applying a potentially pathologising label that could hinder our support efforts.
Catatonic behaviours in autism are often triggered by stress, anxiety, or trauma. This makes sense if we consider that the young person may be in a state of freeze, fight, or flight (with Andrew’s response resembling a prolonged state of freeze). These behaviours are more common in young people with autism who are more passive and find it harder to communicate their wants or needs. Their behaviours may change gradually over time, with subtle signs appearing before a more alarming shutdown or unresponsiveness. Some young people may show early signs such as slowness in movement or speech, or difficulty completing tasks, while others may lose interest in previously enjoyed activities and rely more on rituals or visual supports.
When I spoke with Andrew’s teacher and the classroom assistants, they recalled that his behaviours had changed gradually over several months.
Andrew has always found it difficult to tell us what he needs, his teacher said. So, we didn’t worry too much at first when he started relying on us to prompt him more to go to the toilet or leave the classroom.
But things continued to get more difficult for Andrew. He was no longer using his communication book to ask for his favourite things. Food, which had always been a motivator for Andrew, became something that he stopped requesting.
A holistic approach
So, what can we do to understand and support these behaviours in young people with autism? Shah and Wing (see Further reading) emphasise the importance of recognising that they stem not from unwillingness but from an inability to act. Their approach provides a valuable framework for school staff, focusing on early identification of possible indicators—such as increased reliance on rituals and reduced motivation for preferred activities. This requires in-depth knowledge of the young person, and an understanding of how different environments affect how they cope. Strategies and interventions should focus on identifying and reducing stressors by making adjustments to the environment and daily routines, as well as increasing levels of support. The longer-term aim is to support them in developing effective coping strategies that help them to navigate daily challenges.
How did this translate into practice when working with Andrew at school? Staff could now see a pattern—behaviours that had gradually escalated and that were indicative of his increasing stress, but they were still unsure of all the contributing factors. Further assessment, involving close liaison with his family, shed light on this. At a meeting, his parents explained the impact of the loss of his grandfather, who had died several months earlier. The family, still grieving, struggled to explain the loss to Andrew in a way he could understand.
Andrew came to the funeral, his mum said, but I we all found it difficult to explain his granddad’s death in a visual, concrete way that would help him understand the finality of it. Although he didn’t see his grandad much, it’s had a big impact on us all, and Andrew has always managed to sense when I’m not doing too well. On the days when I’ve been struggling, he can sit near me for long periods without moving.
Andrew’s teacher realised that the loss of his grandfather and the changes in the family coincided with another significant change for him. One of the classroom assistants left around the same time as the loss of his granddad, she explained. Miss Simpson played a big part in supporting him, especially during transitions and in the school yard. We’re now short-staffed and haven’t been able to provide him with the level of prompting he requires as he adapts to these changes. He must feel very confused and overwhelmed right now.
The staff team and Andrew’s parents agreed that they needed to take their time and show patience. Trying to pressure Andrew to act during a freeze episode was likely to increase his distress. Instead, staff began waiting, providing gentle reassurance, using visual prompts, and staying alongside him. If he did manage to start an activity, they offered low-key encouragement and praise. The one familiar teaching assistant who remained in his class became his primary support during transitions. Lunchtime, which had previously seen Andrew freeze with each mouthful, was restructured. Andrew now had his own seat away from his classmates, with his favourite music playing. Movement transitions were also minimised. When staff prompted him to go somewhere, they started with familiar and enjoyable destinations, gradually extending the transitions over time.
When I spoke to Andrew’s teacher again after a few weeks, she told me that he had made it to the sensory room on two occasions and was now managing to eat almost all of his favourite lunch, with less support than he had needed a month ago. At home, his parents were offering quiet reassurance during his freeze moments and avoiding pressure wherever possible. His mum was exploring ways to help him understand the loss of his granddad and was creating a memory box with him. She commented that Andrew seemed to be benefitting from the time they were spending together. Key to the effectiveness of this joined-up approach was understanding that Andrew’s freeze behaviours were indicative of his high stress levels. Before they could support him in learning coping strategies, the adults supporting him needed to help him feel safe again at home and at school. It was still early days, but Andrew was beginning to move once more.
