Key Principles when supporting autistic people
Summary
1. Autism Acceptance
In many spaces and places autism is seen as a negative thing. But Spectrum Gaming proves that autism is not a 'disorder' or a 'burden', it is simply a difference. Just like every other brain type, the autistic brain has its negatives and its positives. This space offers the chance for young people to realise that and learn to focus on their strengths, rather than be defined by their weaknesses.
2. Young people often need to recover from their negative experiences to be able to thrive
We aim to offer a safe space for young people who may not have anywhere else. When young people join our community, they may be struggling because it can be very difficult to be autistic in a world that isn't made for you.
Young people need time, and the right support to recover. Especially since outside of Spectrum Gaming, they may still be exposed daily to trauma and stress. We need to be consistent in our support, especially when boundaries are tested to check we are still a safe, nonjudgmental, supportive space.
3. Young people do well if they can
We believe that all young people do well if they can. Everyone wants to thrive, do well, and no one wants to cause upset with others or break rules.
If someone is struggling - there is a reason why they are struggling. We can work together to identify reasons why and what may help.
4. Co-regulation
Young people need repeated experiences of co-regulation from a regulated adult before they can begin to self-regulate (this is explained more below).
They may also not know how to regulate by themselves and we may be a key resource to help them create ways that work for them.
5. Self-Care
Self care is vital - it isn’t possible to properly care for young people when you are overwhelmed yourself.
6. Neurodiversity affirming practice
We believe in the 5 As of neurodiversity affirming practice, from The Autistic Advocate. This is a strengths and rights-based approach to affirm a young person’s identity, rather than focusing on ‘fixing’ a young person because of their neurotype.
1. Autism acceptance
In the outside world, autistics struggle to be accepted and feel like we belong - not only are we different to the majority but our differences have been painted as negatives by the medical community.
In society we are often treated as ‘less than’ or defective. In a lot of online spaces, the word autism is used as an insult. In most educational and health settings, autism is seen as something to try and fix or change.
Spectrum Gaming changes that narrative. This is a safe space where autistic people are in the majority, we aren’t different here and who we are and how we are is fully accepted. We don’t have to be ‘superheroes’ to be seen as ok, we don’t have to change ourselves in order to fit in.
Autism is not a 'disorder' or a 'burden', it is simply a difference. Like every other person we have both strengths and weaknesses - just in different places to the majority. Things that many find easy can prove a real challenge for us. But autistic brains also have many positives that others may never have the opportunity to experience.
These may include having a logical brain with good attention to detail, the ability to focus deeply, strong memory skills and unique thought processes. Autistic people place less value on small talk and more on openness and honesty. Autistic people may also have lots of knowledge and skills in one specific area.
Being different is often isolating. Most people are afraid of difference and it causes lack of understanding and empathy. We can be mocked for our interests, judged unfairly for our sensory needs, bullied for our social differences. We are reminded over and over - we don’t fit in, we don’t belong.
Which is why Autism Acceptance is a core principle here. And why it’s key that everyone in SG develop a proper understanding of how to support autistic people and foster a culture of acceptance.
2. Young people often need to recover from their negative experiences to be able to thrive
We aim to offer a safe space for young people who may not have anywhere else. It can be very difficult to be autistic in a world that isn’t made for you.
It is important to remember:
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Meltdowns are not an autistic trait, they are a way an autistic child might show us that they are struggling.
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High levels of anxiety are not an autistic trait, they are a sign that children don’t feel safe.
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Traumatic stress is not an autistic trait. It is what happens when things have gone badly wrong.
Autistic young people experience so many difficulties, thriving can be a challenge. A few years ago, I did a survey of autistic children, and made a rap song where each line in the rap is a response someone gave to the survey.
But the important thing here is that this isn’t permanent. We can support young people to thrive and recover from their experiences. Even if young people struggle everywhere else, we believe we can create one safe space, which is a base for young people to grow and develop from. We want to bring back spark, hope for the future and self belief in young people, and we have seen that it works when we get it right:
When we are supporting an autistic young person, it is important to know that because they have had so many more reasons to struggle they experience a lot of additional difficulties such as anxiety, depression and trauma, and life can be incredibly difficult. This means autistic young people need to be able to have the right support to recover, in order to thrive. Because of these difficulties, autistic people can struggle a lot.
Even if you 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. Over time, we can prove that we are a safe space and that we can be trusted, but this takes time and energy. While we are showing young people they are ok here, they may struggle immensely, as they are often used to being ‘punished’ or expected to conform when they are struggling. Showing it is ok to struggle, and reacting to this with care and empathy, is what leads to young people starting to feel safe, then they will struggle less over time.
There are a variety of reasons why life can be more difficult for us:
We live in a confusing world
The majority of brains work ‘instinctively’. While autistic brains are more ‘logical’.
Rather than just doing something, our brains like to know the reasons why. We may not instinctively understand many interactions, but are often very deep thinkers so when we do understand something, we can be incredibly creative or understand it in a very detailed way.
Social interaction has a lot of unwritten rules. Each social group has their own set. Even autistics have their own set, we just aren’t often in settings where we can use them. Unfortunately, the majority have the mistaken belief that only their rules are correct and everyone else is wrong.
So, sometimes, autistic people are put into 'social skills groups' to fix this. It often causes more harm than good. After attending autistic people are still picked on or excluded by others because of their differences. It can bring a feeling of hopelessness to young people who think they have learned something new, but are still excluded by others.
At the start of this guide, we explained that we do not see autism as an inherently bad thing. To understand why it is really helpful to understand the double empathy problem.
Autistic brains thrive when they have purpose and meaning (being told 'why' something is done, rather than just being told 'what' to do).
People do not always understand sensory differences
Everyone experiences the sensory world in a different way. However, the intensity of the experience differs for autistic people.
The intensity can be higher - Shower water can feel like knives piercing through your skin. A fluorescent light can feel completely blinding or can buzz at an uncomfortable frequency, a school bell can feel like a lion roaring inside your ear. Or it can be lower - not being aware you are hungry, or feeling pain.
Perception is what matters. These are our personal experiences - having that dismissed because others don’t experience the world that way is invalidating and often harmful.
We can be expected to ignore incredibly distressing sensory experiences, creating trauma, or be expected to manage self-care when we aren’t aware of hunger/thirst or toilet needs. We can be punished for trying to meet our sensory needs and regulate, such as stimming in class.
Sensory sensitivities are not static. They change all the time, based on your level of stress and how much physical/ mental energy you have. A sound you can tolerate on one day, may be too much the next.
How you experience the senses matters too. It is easier to tolerate a loud sound when you are in control of it.
Learn more about managing your mental energy.
Autistic people often display different behaviours
Autistic people can act differently when in distress, so people may not understand. What does survival mode look like in autistic people?
A typical response when someone is highly stressed is to cry, and people who cry often receive a lot of comfort and support. However, intense crying or ‘flood’ scares others and is seen as fake or overly dramatic. Stress smiling or laughter is seen as mocking or disrespectful. A fight response is seen as aggressive. Flight is seen as disrespectful. Flop freeze and fawn are mistaken for the young person being ok.
This means that instead of support we are often punished or ignored. Our ‘negative’ stress responses are painted as ‘bad choices’ even though these actions were out of our control. And our ‘positive’ masking stress responses, where we are either inactive or highly compliant, are painted as ‘good choices’ and evidence that we are doing ok, even when we are not.
Negativity from others
Unfortunately, autistic people are often picked on/ bullied by others because of their differences.
Due to the double empathy problem, autistic people are also often misunderstood or mistreated by others.
We may struggle to work out the social cues of non autistic people (who are the majority), which can have a negative impact on our relationships with them, and affect how they treat us.
The autism diagnostic process
Young people are typically referred for an autism diagnosis when they or their parents are struggling/ at crisis point. This is a reactive approach which means that young people tend to not just be autistic, but also struggle with anxiety, depression and trauma. When someone receives an autism diagnosis, they often have to try and repair the damage caused by society, services and the diagnostic process. This isn’t helped by many professionals treating diagnosis as a negative thing.
Because of this process, it is also very common for autistic people to express hatred or embarrassment towards their autism diagnosis, as they may learn (incorrectly) to associate all of the difficulties they have experienced with autism.
There are quite worrying statistics around autistic people as a result of all their experiences:
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90% of autistic young people report being bullied
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Suicide ideation is 28 times higher in autistic children than the general population
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Autistic Young People are significantly more likely to be out of education, with over 30% being persistently absent from education and a much higher percentage not accessing any schooling, or struggling with attendance (GOV.UK 2021).
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Disproportionately high numbers of autistic young people feel lonely and isolated often having no or very few friendships.
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Once leaving education only 29% of Autistic Adults are in employment, well less than half the national average (ONS, 2021)
3. Young people do well if they can
We believe that all young people do well if they can. Everyone wants to thrive, do well, and doesn’t want to cause upset with others or break rules.
If someone is struggling - there is a reason why they are struggling which it is really important to identify. But expecting the young person to do this by themselves may not be realistic. They may not have the experience, self-awareness or correct information about how our brains work to know WHY they do something - only that they don’t want to.
But a lot of society is focused on conformity, behaviour management (rewards and punishments) and being able to behave in a ‘socially acceptable way’. Rather than identifying why someone may be struggling and meeting that need, this approach focuses on changing behaviour, without meeting the need behind it.
In the short term, you may see a change in behaviour, which leads some people to believe punishment can work. But a young person acts in the way they do in order to meet their underlying needs. So one of two things can happen:
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Young people start to internalise their needs, resulting in a build up of trauma, which is detrimental to the long term wellbeing of a young person. They stop trusting others and stop being able to ask for help.
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A young person can no longer hold it in and ‘explodes’, or reaches a state of burnout, where they can no longer function in the way they used to.
This can also cause a huge amount of negative emotion/ upset/ negative feelings towards others.
In the longer term, this is also likely to result in a much more negative experience:
X was given a detention for walking out of the classroom at school. His teacher said he has to stay in class until the lesson ends no matter what. After his detention, X didn’t walk out of the classroom again. But one day, the class was very loud and he had a HUGE meltdown, where he trashed the entire classroom. X was then excluded from the school for his bad behaviour.
What happened here?
The reason X walked out of the classroom was because he was getting overwhelmed, so he knew he had to go for a break or he would reach meltdown mode. His teacher expected him to stay in class so said this behaviour was unacceptable and gave him a detention.
In the future, X tried his best to stay in class so he wouldn’t be punished, but this meant going through distress when he was struggling during very loud periods. He held it in for a long time, with his stress around the class increasing more and more over time. Then one day, because he wasn’t allowed to escape and was trying his best to hold it in, he reached meltdown mode and destroyed the classroom.
The teacher focused on his behaviour, rather than taking time to understand why he walked out of the classroom. This meant that in the future his needs were not being met. During the lessons he struggled to pay attention as much as he was highly stressed, and eventually he was excluded due to the meltdown.
What could have helped was:
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Allowing X to walk out when needed as a way to prevent further distress
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Identifying the reason why x was walking out, and working together to create an alternative way of reducing overwhelm, without him leaving the classroom. X said some options would have been being able to put on ear defenders, or asking for a toilet break (and this being accepted every time he asked)
As a result of this, X had intense feelings of confusion/ upset. He was punished for trying to meet his needs, and was excluded after not being allowed to do this. In the longer term, X struggled to trust any adults. They started to rebuild trust with adults through the Spectrum Gaming community, but it took over a year to gain the confidence to attend a different school.
X now has a one page profile in his school that ensures he is able to do what is needed to meet his own needs, and is feeling much better in a school that is more understanding of him.
At Spectrum Gaming we do not believe in focusing on changing behaviour and do not punish young people. We believe the best way to support young people is working out the reasons why they are struggling, and addressing the root cause, rather than just focusing on what we see.
Autistic people already have to conform an incredible amount just to live in a world that isn't made for us which often causes massive stress day to day. Some people may already be past the limit of how much they can adapt their behaviour.
We do not believe people should be punished for taking action to meet their needs, or for the behaviour they display when having a meltdown. When you are having a meltdown, the logical part of your brain is not working, you are no longer in control and your amygdala is doing whatever it thinks it needs to in order to keep yourself safe.
After meltdowns, autistic people often feel huge feelings of sadness, shame and guilt for the behaviour they couldn’t control. Punishing them for this does not address the root cause, but also increases the amount of shame/ guilt they experience.
In order to learn our approach, people often have to unlearn what they think is helpful as rewards and punishments are standard practice when supporting young people. But we know from working with our community, that we have a way of working that better meets their needs and enables connection/ trust.
So what is the alternative?
Rather than punishments, we believe in understanding the reasons why someone is struggling, and what can be done to support this.
There is always a reason why, we just may not necessarily know what it is just yet. We can use our own insight, but also work together with young people to identify it. When we go through possibilities with them they can be pretty good at identifying what may fit what is going on and what doesn't (but note they also might not know themselves).
When a young person is stressed, the logical part of their brain stops functioning as effectively, and it is much more difficult to use reason and problem solve. When a young person is highly stressed, it is really important to focus on doing what is needed to help them become calm/ relaxed.
So if young people do not choose to ‘misbehave’, what are the reasons they struggle? The main reasons can be split into three main sections:
A high level of stress
We mentioned above that there are a variety of reasons why autistic young people experience a higher level of stress. This then results in experiencing a higher level of stress related behaviours. When you are stressed you can become dysregulated which makes it harder to think rationally, and your brain starts struggling to cope with the situation.
There are a variety of stressors that can be experienced, here are some examples:
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Bullying
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Sensory harm
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Being around people who are unpredictable/ who you don’t trust
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Lack of understanding from others
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Stimulus stacking - lots of small things happening over time, resulting in a gradual increase in stress, when you don’t have opportunities to relieve that stress
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Processing overload - too much going on at the same time, answers required too quickly, instructions coming in too fast.
Needs that aren’t being met/ struggling internally
A young person may struggle because of how they are thinking or feeling. This can be as a result of previous negative experiences, or because they do not have the right support in place to meet their needs.
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Low on mental energy
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Lack of sleep
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Illness
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Low general wellbeing
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Trauma being triggered/ activated
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Lack of self acceptance
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Feeling lonely
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Fallout with friends
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Family issues
When someone is struggling because needs aren’t being met, it is really helpful to identify what these needs are and put something in place to help with them.
If someone is struggling internally, empathising with them is really important.
Lack of skills to deal with the situation
Every autistic person has a spiky profile. This means a young person may excel at some things, but find others that are relatively easy to most people, incredibly difficult.
Let’s also not forget that they are young - their brains are still growing and developing, so they will have other skills that are also undeveloped. Remember that brains don’t stop developing until the age of 25, so there are some skills that young people may not have that will develop with age.
Some skills can be taught: If a young person is new to our community, it may be unfamiliar to them so it may take a lot of time for them to ‘learn the ropes’ and understand how the community works. They may not currently understand how to navigate the space in the best possible way, but they can be supported to understand this.
Some skills come with time: Younger members may struggle with empathy towards each other. This isn’t because “autistic people struggle with empathy”, but that empathy is a skill that develops in older ages. In a non-autistic children, children start to properly recognise that someone else’s feelings may be different from their own, and can navigate complex moral decisions from the age of 8. This is just a rough guide because autistic people develop along a slightly different timeline to the majority.
Some skills are part of a young person’s individual skills profile: As adults, autistic people still have varying skill profiles, where they may excel in some things but struggle in others. These spiky profiles are an innate part of them, so some of these skills will not ‘develop’ - they are a natural part of human variation. When this is the case, it is really important to focus on someone’s strengths, rather than trying to ‘fix’ weaknesses
No matter the reason for the ‘lagging skill’, it is ALWAYS helpful to identify what the skill is, and put support in place so that it does not become a barrier. When there is a lagging skill, there is usually a similar pattern of stress related behaviour. You can then work with the young person to identify and create solutions to these.
4. Coregulation
Children need repeated experiences of co-regulation from a regulated adult before they can begin to self-regulate. We may have to act as “external nervous systems” for children who are constantly in a heightened state. They may also not have a toolbox to learn how to regulate by themselves and we may be a key resource to help them create tools that work for them.
As explained above, autistic people may experience a huge amount of difficulties, resulting in high levels of stress/ trauma. The result of this can be that autistic young people are unable to regulate themselves when they are stressed, as they may not have much experience of being able to get themselves to a feeling of safety. When this is managed successfully e.g. leaving a room, they can be punished for it - which sends the message that regulating themselves is not ok.
This means that we often have to act as “external nervous systems” for young people who are in a heightened state. And we may have to support them in creating their own toolbox of regulation techniques.
Through our actions and through co-regulating with young people, we can show that they are safe, and also that we are safe people to go to when they are stressed. Then over time, with repeated experiences where it is ‘ok to not be ok’ and young people are met with support and empathy, they will be able to better regulate themselves over time.
The feelings and behaviour of people around us affect how we feel. This applies to everyone, but can be more important in the case of autistic people, who often have higher emotional sensitivity than others (one of the reasons autistic people can struggle with eye contact, is because eyes are incredibly emotional so they can cause emotional overwhelm). Many autistics emotionally mirror - feeling a nearby person’s emotion as if they are our own.
This means that when young people become upset, they can calm down quicker if the people around them are genuinely calm, and demonstrate how to calm down to them.
Co-regulation is a skill that can be learnt - our guidance on co-regulation can be found here.
5. Self Care
Self care is vital - it isn’t possible to properly care for young people when you are overwhelmed yourself. You will start to lose access to your empathetic responses and strategies that you know work when you are at your best.
Supporting young people intensely can also result in feelings of burnout. Caring for young people is a hugely positive attribute to have, but it can also result in trying to fix everything for a young person, and this can take a huge mental toll. Feelings of care and empathy are a huge driving force, as we do not want young people to struggle, and it often leads to us feeling sadness/ anger/ frustration, but it can also lead to overwhelm.
Therefore, we think it is incredibly important to ensure you have tools, strategies and practical support available for self care, so you can always be at your best.
6. Neurodiversity affirming practice
We believe in the 5 As of neurodiversity affirming practice, from The Autistic Advocate:
Authenticity – A feeling of being your genuine self. Being able to act in a way that feels comfortable and happy for you.
Acceptance – A process where you feel validated as the person you are not only by yourself but by others.
Agency – A feeling of control over actions and their consequences in your day to day life.
Autonomy – A state of being self-directed, independent, and free. Being able to act on your ideas and wants.
Advocacy – (Self-advocate) to speak for yourself, communicate what is important to you and your needs or the needs of others.
See more about what this means in practice here.