Understanding Autism and Trauma
What is trauma?
When something happens which makes us feel unsafe, our brains respond by going into survival mode. Your brain sees something frightening, feels you are in life threatening danger and it must do whatever it can to get you to a sense of safety.
This is a natural process and it’s there to keep us alive. If you meet a wild animal, you need to get away fast, and so your brain will prioritise that. It won’t waste time looking around to check if that animal is really dangerous, it will just tell you to get out of there, now! There’s no time to stop and think.
The word ‘trauma’ is used to mean several different things. Sometimes it’s used to mean an actual event - like, we might describe a road traffic accident as ‘a trauma’. Other times it’s used to describe what happens in our brains during and after an event - more like a ‘traumatic stress response’.
When a traumatic event happens, our brains go into survival mode - and then, once we are safe again, our brains go back to normal. We feel safe and calm again, even if the event was really scary.
However, sometimes things which happen can affect us for years afterwards. Even when we are safe from whatever made us feel in danger at first, our brains continue to behave as if we are under threat. That means that you might have the urge to run away, or to fight, or to freeze - when actually there is nothing dangerous. Your survival mode is being triggered and it can feel really frightening. This is a traumatic stress response. Sometimes that might lead to a diagnosis of post-traumatic stress disorder (PTSD).
The focus of this guide is chronic trauma. This is where you have a long term emotional response to an event (or events), which then continues to have a negative impact on your life. Whenever we mention the term trauma, we are referring to a chronic traumatic response.
Here are some examples to illustrate what a traumatic stress response looks like:
Someone walked up to Katy with a knife. Katy saw this and they were very scared. They ran away and successfully escaped from a knife attack. This was a very scary, emotional event which left them shaking, confused and worried for a few hours. They rang their mum to talk about it, and for a couple of days they kept thinking about it, but then the memory stopped feeling quite so vivid. They rang the police to give a statement and talking it through actually seemed to help. The incident was upsetting, but Katy was not traumatised by the incident.
As you’ll notice from Katy and Ben, different people can have different reactions to events. Something which traumatises one person might only be upsetting for someone else. Some events feel traumatic at the time, but then people are able to recover afterwards. Even with very big traumatic events like a natural disaster, not everyone will experience traumatic stress afterwards.
When it comes to trauma, how the person experiences an event is important - one person might feel really frightened and that their life is in danger, whilst another person doesn’t feel scared at all in the same situation.
One person can be in a life-threatening/truly dangerous event and not develop a traumatic stress response afterwards, and someone else can have an upsetting (but safe) experience, but their brain perceives it as threatening, and this results in an ongoing emotional impact. Trauma can have a serious negative impact on someone’s life.
Understanding survival mode
When we don’t feel safe, we go into survival mode. Lots of people know about the Fight or Flight response - and that’s quite easy to spot. When a person wants to fight or run away, you can usually tell by their body language. They might start to pace around, or speak more loudly, or appear aggressive. There is a risk for autistic young people that this is seen as ‘challenging behaviour’ and then they are punished for this. That will make things worse, because the reason for the ‘behaviour’ is that they feel unsafe and threatened. Punishment will make them feel even less safe, and so the behaviour is likely to escalate - which will then result in more punishment. Things can get worse and worse, then young people are put in seclusion, restrained or excluded.
However, there are other responses in survival mode. If our brains think that we can’t fight or run away, we might instead go into Freeze or Fawn mode. Freeze is when you are holding very still - like a rabbit in the headlights - not knowing what to do. When someone goes into freeze they may seem like they’re day dreaming, or they may look a bit ‘glazed’. Fawn is another mode, and this is when a person becomes very compliant and stops protesting. This makes sense if you can’t escape the frightening situation. Unfortunately at school this ‘Fawn’ response is often interpreted as a person being ‘Fine’ when actually they aren’t fine at all.
There are 6 survival responses in total: fight, flight, freeze, fawn, flop and flood. You can read more about them here.
It is really important to note here that survival mode isn’t always easy to spot. A common survival strategy that is detrimental to the wellbeing of autistic young people is masking. Sometimes, masking is a conscious choice, but for a lot of young people masking is a survival response. This is when a person is highly stressed but does not appear so from the outside, because they have gone into the ‘Fawn’ mode of survival.
Survival mode can be activated in two main ways:
Window of Tolerance
One way to think about our internal emotional states is by using the idea of the window of tolerance.
This idea suggests that we all have a zone within which we are capable of functioning and remaining emotionally stable, and we can think of that as a ‘window of tolerance’. This was first described by Daniel Siegal. When we’re in our window of tolerance we can manage to get through life without becoming too stressed, and we can manage some difficult experiences and keep ourselves on track. We might feel a bit stressed, but it’s not too much. We can adjust when things go slightly wrong, or not to plan.
However, when the demands on us are too great and we can’t manage anymore, we come out of our window of tolerance. We start to feel stressed and anxious all the time, or we start to shut down. We go out of our window of tolerance and we stop processing information in the way that we normally would. This is because the survival part of our brain is taking over.
The events that bring someone out of the window of tolerance can accumulate - so it could be one big event, or it could be lots of small stressful events all combining. When it’s lots of small events, it’s often hard for people to understand why a person got so upset about something so apparently minor. ‘But nothing happened!’ they might say, because they didn’t notice all the lead up.
Fight, flight or flood
Agitated, crying, trying to get away, angry, pacing, aggressive, violent, speaking fast or more loudly than usual.
Window of tolerance
calm, engaged with life, able to cope when things go slightly wrong.
Fawn, flop or freeze
Keeping still, shut down, not able to hear or respond. OR very compliant.
When your body is highly aroused and you are outside your window of tolerance, it’s more likely that you will feel threatened by things which usually might not make you feel under threat. You can cope with less because you’re already outside what you can manage. If this goes too far, a person will go into meltdown.
The example of Bert shows how someone gets outside their window of tolerance because of an accumulation of events and things in the environment. They then might feel upset and embarrassed about their responses because it seems like an over-reaction - but in fact it’s because everything adds up together.
"Bert has walked into the dinner hall to eat lunch with his school year. Normally, he wears ear defenders due to having a high sensitivity to sound, but he forgot them and his teacher asked him to try and eat in there anyway.
There is lots of chatting, and people are eating a variety of food. Bert has high sensitivity to sounds and smells so found this a painful experience. Normally he could tolerate it because his ear defenders reduced the sound significantly, but there was too much sensory input for him which was making him increasingly stressed. His stress increased so quickly, that he struggled to work out a plan of what to do, so stood still. Then, his stress got so high that he reached meltdown mode. He ran out of the dinner hall, climbed over the school gate and ran away.
The next day, Bert was really upset at what he did, as he knew there were safer options like asking a teacher if he can sit in a quieter room for lunch, eating outside or asking if his dad can be contacted to bring in his ear defenders. But at the time, he was in survival mode and didn't have the ability to plan ahead, his survival brain took control and needed to feel safe, which meant escaping."
This happens to many autistic young people. Everything adds up and they find themselves outside their window of tolerance a lot of the time. Some young people accumulate stress all the way through the day and then when school ends they just can’t deal with another thing. Even needing to get into the car or put their coat on might be too much. They quickly go into Fight or Flight mode and it’s hard even to get home. Often adults don’t understand what is happening then, because the young person was apparently fine all day. They miss the signs that stress was accumulating through the day.
Trauma and memories
Our memories are incredibly important in how we perceive danger. This is because our brains use our memories to predict danger. We collect memories of experiences, to keep ourselves safer in the future.
Let’s imagine you had a close encounter with a rabid dog. It came running towards you barking and you were terrified. You ran away and just in time got inside your house. Phew! Your brain is going to want to remember every detail of that in order to make sure that you won’t have another close encounter where you might get bitten. Next time, you might not be so lucky.
In order to protect you, your brain will remember that event in a different way to how it remembers other, non-threatening memories. It will use that memory as a clue in the future. If you see a dog which looks a bit like the rabid one - maybe just the colour or the shape of the ears - your brain will make the match and will send you into survival mode straight away so you can get out of there - no questions asked!
That dog might be the sweetest puppy in the world, but your brain sees the similarities with the rabid dog and you’ll be running away before you’ve had time to think - or maybe your heart is beating fast and you are feel terrified but you don’t know why.
Our memories affect what we perceive as dangerous
In order to use our memories to help protect us, our brain has two different storage systems.
Memories in the hippocampus are everyday memories - memories of non-threatening situations. We can think of the hippocampus as being a bit like a bookcase.
Memories in the amygdala are the ones that we use to predict danger. Memories go into the amygdala when we are highly aroused at the time of the event. If we feel very frightened, then those memories will go into our amygdala and will be used to predict danger in the future. Our amygdala is more like the alarm system.
How do we store memories?
The Hippocampus (Hippo)
The storage system
The job of the Hippo is to place memories into your long term storage.
When a memory has been processed, it is placed here, like a book being placed on a shelf.
The Hippo is like a library: it is a collection of stories that can be accessed whenever you want them. These stories are safe to recall, you may remember the emotions you felt during the memory, but don't feel them as intensely anymore.
Hippo memories have a time tag attached. The books age and feel older as time goes on. You might be able to remember your first teacher at school, and it feels longer ago to the teacher that you had last year.
The alarm system
Memories are stored in the amygdala (alarm system) when you have a high level of stress, anxiety or overwhelm.
When you reach survival mode you act before thinking. It’s like a hijack. Your brain wants you to get out of there, fast.
These memories are different from the hippocampus memories. They aren’t like books. They’re more like screwed up pieces of paper. The memories don’t feel like stories in the past, but are full of feelings and body sensations which feel like they are happening now when you think about what happened. This is sometimes called a ‘flashback’ and it can feel like the experience is happening again. Flashbacks can be triggered by lots of different things in the environment. Sometimes they are pictures or like little videos, but also sometimes people feel pain again, or start to smell things or taste things from the past. Sometimes people might hear voices or think they see people as part of a flashback.
The amygdala alarm system is overly cautious. It thinks it is better to be safe than sorry, so it may link things in the environment to these feelings, whether this is helpful to you right now or not.
Memories in the amygdala are more fragmented than memories in the hippocampus. They often don’t have a beginning, a middle or an end. This can mean that you just think about the worst parts, again and again, and it can feel like you’re stuck there.
Even if considerable time has passed, you can feel the emotions of memories stored in the amygdala incredibly intensely. Things which happened years ago can feel like they are happening again right now.
Memories don’t stay in the amygdala forever. When we are able to think about things, talk about them with people we trust and have new experiences of feeling safe, memories start to be processed. We all have the capacity to process memories - it’s like healing from a wound - but sometimes it can get stuck and we don’t process the things which have happened to us.
When memories are processed, you can think about them without getting upset and without feeling that it’s happening again. Memories start to feel more like stories.
To understand autism and trauma better, it is important to recognise that autistic children often have a much higher level of stress than the general population. Read more about autism and stress in our key principles when supporting autistic young people.
Autism and trauma
Being autistic can mean that people experience higher levels of trauma, and that the way that they experience the world may mean that they find daily events more stressful than other people:
Increased sensory sensitivities
Demand avoidance - Struggling with anything that is being asked of them, even if it is something enjoyable or what they want to do (someone may already be 'demand avoidant' if they have a PDA profile)
Catastrophic thinking - always imagining the worst case scenario when there is any uncertainty
Feeling ‘stuck’ - feeling unable to problem solve for themselves. You can feel distress, but not be able to use your logical brain to work out solutions, and this can happen on a daily basis. People may want to go to school, make a meaningful contribution or learn but feel unable to, and don't know how to resolve this, leaving you feeling stuck/ helpless.
A sense of shame - You do not want to struggle as much as you do, and are aware of the impact it has on others around you.
Here are the main effects that are reported from young people:
Being unable to process information as much as they used to. One young person used to be an avid reader but after difficult experiences at school (resulting in him now not having a school place), he reports not being able to focus on fiction books enough to be able to read them
Difficulties with sleeping (though sleeping difficulties are reported in over 90% of our community members)
Feeling angry all the time
A constant feeling of anxiety that never leaves
Persistent fear of the outdoors
Young autistic people have told us that they find a wide range of things highly stressful, and still feel distressed years later when they think about them. Events can cause traumatic stress when they have a meaning for the person which may not always be clear for other people. For example, an autistic young person may find watching a certain TV series very soothing and then if they suddenly disappear from Netflix, they feel a deep sense of loss and grief. Some experiences which autistic young people have found very stressful include:
The way a teacher at school spoke to them.
A friend moving away.
A bus route being changed or Routefinder buses being taken out of service.
A Netflix series being taken off unexpectedly.
Not understanding the rules at school.
An update to a video game or computer system which results in everything looking different.
A change to the design or recipe of a favourite product.
Young people can become very reactive to what may seem like small things to non-autistic people. Even if adults are empathetic, caring and understanding, young people may instantly go into defensive mode as they may have learned that the world and people are unsafe. This can then mean that others perceive the young person as a ‘danger’ and they lose out on additional opportunities, as people are unsure on how to best support them.
But remember, this is because young people feel threatened and are in survival mode. Their reactions make sense considering what they are experiencing: What does survival mode feel like?
Due to higher stress, autistic people are likely to have more memories stored in their amygdala, and this can then cause more stress!
High levels of stress creates more memories stored in the amygdala, which then means our brains become more hypervigilant (because they expect danger) which can in turn cause more stress. The amygdala can become very sensitive and you can get stuck into a vicious cycle where you are always in survival mode and always feel unsafe. This can then result in autistic burnout, which is an incredibly difficult experience for anyone who goes through it.
What helps? The importance of processing things which happen to us
Over time, many memories move from the Alarm system to the Hippocampus.
Just after a traumatic event, everyone feels difficult trauma related sensations. But over time, these symptoms will reduce, as the events are processed and are stored away in our hippocampus. A processed memory is still there - we can think about it - but it doesn’t feel like it’s happening again. It doesn’t feel distressing to think about it.
Memories in the amygdala still feel as distressing, no matter how much time has passed, while Hippocampus memories fade away and feel more distant over time.
When memories are processed, they are still there, but no longer trigger a survival response. You may remember the emotions you felt during the memory, but don't feel them anymore. Everyone has the capacity to process difficult events and we do it all the time. When we talk to people, think about what has happened, get angry and cry, we are often processing what happened to us. We are making sense of the experience and putting the memory in its place in the bookcase.
Autistic people may find memories more difficult to process
We all have the capacity to process traumatic memories, but we have to have the right environment to do so. We need to feel safe, we need caring people around us, and we need to feel that we can think and talk about what happened to us. When we are in a state of ongoing stress, that might not happen.
Sometimes a traumatic event will just be too much (or there will be too many events) and we aren’t able to process it ourselves. That’s when we might keep on feeling the distress of what happened. Then we might need help which could include trauma therapy.
Autistic young people often don’t have the tools or support to be able to process negative experiences, and their behaviour and emotions may not be understood as a response to trauma by the people around them. This means that they might be punished or blamed for their traumatic stress, which can then add to the stress.
When these negative experiences go on for too long without enough support, then a person can burn out. They lose their capacity to come back into their window of tolerance and they feel stressed all the time. Once this has happened, recovery can take a while.
So, how can we reduce traumatic stress in autistic young people?
Take a look at our Guide to autistic trauma recovery
Autism and trauma summary
Everybody experiences different events in their lives/ We all respond differently, meaning that the same event can have little impact on one person, and a huge impact on another.
This means that something that may seem like a small experience for you, could be experienced as traumatic for another person.
Something may not be traumatic for someone one day, but might be the next.
‘Trauma’ is used in different ways. It describes events, but it also describes our thoughts and feelings in response to things which happen to us. Trauma isn't just about what we physically experience, but also our thoughts or feelings and how intense those can be. Sometimes something that someone says, or a piece of information can create a traumatic stress response.
The more frightened, helpless or anxious you feel in the moment, the more likely you are to have ongoing problems as a result.
Trauma is not just caused by big or scary incidents. Trauma can be:
A scary/ dangerous moment
A less scary/ dangerous moment, experienced when you are experiencing a high level of stress
Repeated small negative experiences which build up over time, making the trauma grow bigger and bigger, if these experiences are not properly processed
There are things we can do to help people to process trauma and minimise the impact it has on their life.
There are some things we naturally say or do as humans which accidentally make trauma worse. Being aware of what we do and the impact it has is really important for meeting the needs of young people.
Brains work in interesting ways - trauma can be a frustrating, confusing experience. It can be a barrier to what you want to do. It can feel like your brain is being taken over and it’s confusing. People sometimes feel they have no control over their responses and this can be scary.
As one young person said:
"I really, really want to find school easy, but I just freeze at the thought of it”
When someone is violent, runs away, or freezes/ becomes submissive and compliant, this is because they are in survival mode - the exact same mode your brain goes into when it is in life threatening danger. Punishments cannot reduce this, but can make it worse, or do more harm internally. You can’t use punishment to help someone feel safe.
Autistic people are more likely to experience trauma, and there are a variety of supports that can be offered to help them process this.
In an ideal world, autistic people can learn useful strategies BEFORE they struggle, to minimise the negative impact trauma has on their lives.