What does it mean to be neurodiversity affirming?
Spectrum Gaming believes 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 – To speak for yourself, communicate what is important to you and your needs or the needs of others.
Here is a bit more about what this means for us...
To know what autistic authenticity looks like, it is important to recognise that happiness and positive wellbeing looks different in autistic people.
Once autistic people have positive self identity and wellbeing, they tend to ‘behave’ more autistically. Autistic people naturally communicate, act and behave in different ways to the majority and embracing this is really important for their wellbeing.
Typically, autistic behaviours/ ways of being are seen as wrong, but this is due to the double empathy problem
Autistic people often describe what is known as the 'Double Empathy Problem' - as much as autistics struggle to understand the social norms of the majority, the majority struggle to understand the social norms of autistics. Unfortunately, the majority for the most part, instead of recognising it is just a different way of being, chooses to label their way as the only ‘right’ way and everyone else as wrong.
In non autistic society, autism can be seen as a negative thing/ something to change or fix. But we learn a lot about autism in spaces like Spectrum Gaming, where autism is openly discussed, and autistic people are the majority while neurotypical people are actually the minority. We see that autistic people have their own culture based around autistic patterns of thoughts and interests. In autistic only spaces, where the double empathy problem and lack of adjustments are not a barrier, we can see what autism really is and the things that autistic people have in common.
Autistic people may:
Stim: Stimming or self-stimulating behaviour is a wide variety of activities that can be physical, visual, tactile, taste, chewing etc. It serves a wide variety of purposes - regulation, emotional expression, sensory boosting/balancing, dopamine boosting, creating a focal point to shut out other stimuli, stress buster, stimulating the vagus nerve or just plain enjoyment.
Every human being stims, it is just autistics may do so in larger or more unexpected ways which are considered strange.
Converse differently: Autistic people often prefer to not say hello, goodbye, doing small talk and instead going straight into talking about interests/ passions. Typical small talk for the majority could be distressing for an autistic person. The rules are complicated and confusing and it appears to serve no point.
Autistic people often struggle with the idea of 'hierarchy' and people being in charge - we are more likely to value others for their skills and expertise, not positions of authority.
We are often very blunt/ open and honest as we believe honesty is the best way to move forward. Clean and clear avoids misunderstanding and misinterpretation. We also judge ideas, not the person behind them. This can cause tension/ upset when non autistic people think you don't like them when you just think the idea is bad.
It is quite acceptable in autistic culture to “infodump” on a topic whenever it happens to come up - this is where you share a HUGE amount of information on a topic, and it is common when you are talking about something you are really interested in.
Autistic people often ‘play’ in different ways to non autistic people. Playing alone while being together or doing shared activities that don’t require continual conversation are normal parts of autistic play. Existing in the same space can offer a strong feeling of connection, without having to talk.
Sharing similar experiences as a way of displaying empathy is normal for us. We tend to swap SAME stories, sharing a time when we felt similarly in our own life, not as a competition, but to reflect how well we are listening to each other.
We may give gifts in different ways. We share things that are valuable or interesting as a sign of affection, OR giving someone a thing you know they are interested in - memes count!
"I found this cool rock/button/leaf/etc and thought you would like it"
We can feel emotions incredibly intensely - and express them in unexpected ways. This means that becoming overwhelmed by emotions can be quite normal for some people on a daily basis, as well as expressing the emotions through the whole body rather than just the face. Often in a non autistic space if this happens, people can see you as ‘unpredictable’ or irrational, whereas most autistic people understand this overwhelm, and know you will be calm/ relaxed again when you are given time and space.
“In Spectrum Gaming we ran a Roblox event, where a young person became overwhelmed after 15 minutes of play and he left the group. Another young person said ‘Don’t worry, he will be back soon, he just needs some chill time for now’. This young person also sometimes gets overwhelmed at school. Unfortunately as not many young people understand autism, this has resulted in him falling out with a lot of friends."
Acceptance is the process where you feel validated as the person you are not only by yourself but by others.
Autism is typically seen as a ‘dirty’ word - it is never spoken about, which can have a huge negative impact on young people.
Credit: Autistic Not Weird
We believe in openly talking about autism with young people. ‘Breaking the ice’ can cause discomfort in the short term, but this is really important for enabling acceptance and discussions for young people in the longer term. It makes our experience normal and day to day instead of a shameful private thing.
Books and videos can be useful sources of information but can also be a very difficult/ overloading process. Having a space where people are openly autistic, talking about their strengths and difficulties in relation to autism allows young people to take the lead in asking questions/ enquiring about it. Then we can ‘drip feed’ information a bit at a time rather than giving too much information at once.
How we talk about autism is important too. At Spectrum Gaming, we ask that the staff team use ‘identity first language’ (autistic person) rather than ‘person first language’ (person with autism). There is considerable research that shows ‘autistic person’ is the preference of people with lived experience, but the reason why is why we believe in this language switch:
A survey from Autistic Not Weird, which had over 5,000 responses from autistic people showed:
“Those who were negative about their autism disproportionately called themselves ‘people with autism’. Those who were positive about their autism disproportionately called themselves ‘autistic people”. - To everyone who tells me not to say “autistic person”
This is a similar journey that we have been through personally and seen within our community. As people become more accepting of being autistic, they start to use more ‘accepting’ language. However, personal identity needs to be respected, if an individual autistic person prefers ‘person with autism’, then you should use their preference when referring to them. Some young people may have hatred or shame towards their diagnosis, so they may be upset by accepting terminology. We can honour their preference when referring to them individually and promote acceptance in other ways (the main way being having open, positive discussions about autism). Hopefully they become more accepting of being autistic over time.
We also do not use ‘functioning labels’ such as low/ high functioning autism, or mild/ severe autism. All autistics are just referred to as autistic. This is because functioning labels do not ever accurately reflect how a young person experiences being autistic. It doesn’t tell you anything about WHAT the challenges are, what situations they happen in or how to support them. And it tells you nothing about their strengths.
Every autistic person has a spiky profile which means they often have high skills and high challenges at the same time. Some challenges can be more disabling or more visible than others, but focusing only on challenges can cause others to ignore their strengths, and treat them as ‘less than’...
There is a cool explanation of this concept here: https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/
A feeling of control over actions and their consequences in your day to day life.
We try not to do things for young people, but instead act as facilitators. Young people learn by being able to try things out. Even if you think you know what is best, we learn the best by trying things for ourselves.
We can work with young people to identify and minimise risks, offering safety options and more, but then it is important to let young people take control of what they do and how they act.
We believe that young people know what they are capable of and are able to challenge themselves. If a young person is struggling to do something/ take part, this is often because we need to make changes to how we run the session so it better meets their needs. Pushing a young person to get involved or do things differently could be too much and could send them into overload. This would be ok when they are calm, but when you are worried/ stressed, the logical part of your brain doesn’t work as well as it usually does. Of course there are things young people can do differently but we should be thinking about what we can change first.
If there are things young people could try, it is really important to not focus on these changes in the moment. If a young person is doing an activity, this could be too overwhelming for them. Learning happens best when someone is calm and relaxed, so taking time after the event is really helpful to plan for the next time.
Support/ encouragement can add pressure without realising, and can make the experience more difficult.
If a young person really wants to do something but it hasn’t been possible, that’s ok:
We can work together with them when they are calm/ relaxed to work out how we can adapt the activity to suit them better for next time
Sometimes, just getting involved for the first time is the first step to being more comfortable in the future
If a young person pushes too much and tries something they aren’t ready for, while this is difficult for them, it is a learning experience too. Allowing young people to take the lead, and reflecting with them during a time when they are calm is really helpful for helping them to gain autonomy, and to better understand themselves.
A state of being self-directed, independent, and free. Being able to act on your ideas and wants.
Young people should be able to take the lead and follow their passions, interests and goals. Having structure/ making people do activities removes a sense of autonomy.
Instead, we believe in a ‘semi structured’ approach. This means young people can take the lead, but we have back up plans/ structure in place for when a young person is struggling to get involved or is feeling stressed and needs this structure to reduce uncertainty/ stress and help them to feel comfortable.
Our forest school is a great example of a semi–structured space. When young people attend they are able to do whatever they would like to do. We provide the tools (hammocks, swings, tools, fire) and trained staff, but we allow young people to take the lead, and are there to assist with them achieving what they would like to.
But we also do a lot of planning for the sessions. We have a variety of activities planned for young people to get involved with if they need structure/ direction. Here is an example information document that shows the amount of structure we have available for when we need it
To speak for yourself, communicate what is important to you and your needs or the needs of others.
We believe in young people being able to have a say.
Within Spectrum Gaming, we have a variety of ways for young people to share how they think services should change/ can improve
Feedback and improvement channels
Review meetings/ surveys
We believe autistic young people should have a voice outside of SG too, so do what we can to champion their voices externally.
We work with our young people to decide on their priorities and run advocacy projects based on them. This includes wider projects, such as the Barriers to Education project and work around Youth Loneliness, but we also create videos and other resources which we share on social media.