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Communal Space as an autistic person or: What’s the big deal about other people?

For a long time I didn’t really understand what the big deal was about being with other people. Yes, they could be funny, kind and interesting. But frankly, as far as I was concerned, I was already all of those things for myself. The other people bit, especially when there was more than one, just felt like a chore, something that was just part of being alive, something I had to get through so that I could be alone again. That might sound very sad to some people, they might think I’m describing a pretty lonely life, but to be lonely you have to feel like your missing something, and for a long time I didn’t. I had nature, knowledge and creativity and that was good.

As I got older things did start to change a little, I did start to want company, not all the time and I don’t think I needed it in the way a lot of my peers seemed to, but I did want it, want something. I had friendships throughout my childhood and adolescence, and these were really important and valuable to me but, especially as an older child and teenager, they often didn’t feel like they were mine.

Growing up autistic in a primarily non-autistic world means constant compromise. There’s the more surface level compromise; just doing things you don’t want to do or understand the point of, but don’t really hurt you in any way (in my case putting down a book or a project from time to time and looking at a person). Then there are the deeper compromises, the ones that aren’t always told to you, but you somehow learn. Suppressing the way your body wants to move, talking differently, learning how to answer people’s questions in the way they want you to and not the way that makes sense to you. Not looking too closely, not being too weird not being annoying or boring or repetitive. Compromises that, feel pretty one directional and ultimately just mean ‘be a different person’, don’t be autistic.

When you do this for long enough you lose the memory, the feeling of who you even are. It seems to be quite common for people like me, who get diagnosed or get an understanding of themselves as being autistic when they’re an adult, to go through a pretty significant change in how they behave. This can be in very fundamental ways like how they express themselves and how they relate to others. To the people around that person it may feel like the persons changing into someone else, but to the person themselves it feels like becoming. It’s just figuring out what’s your instinct, what inherent to who you are and what is the result of so much time and energy going into trying to be someone else.

I went through this, it was exhausting, and I’m probably not quite done yet. It’s been profound, confusing, overwhelming, sad and joyful. Often all at once. There are many things that have surprised me but perhaps the most significant of these was what was figuring out what was at the core of my lifelong confusion and difficulty with company, friendships and community. And it wasn’t that there was something just deeply wrong with me as I’d always feared. It’s actually very simple:

You can’t make meaningful connections with other people when you’re not being yourself.

Of course in practice it’s not simple at all. In the context of our culture and society it’s very difficult because the ways of being that are valued and held up as proper and even truly human tend to be very neurotypical ways of being (they also intersect with race, gender and class*). The way we’re meant to talk to each other, the way spoken language is held up as the truest way of communicating, the way we’re meant to sit and look each other in the eye, the things we’re meant to enjoy, how we should sit back and be entertained, respect a social hierarchy and value different kinds of relationships over others.  And most poignant to me, the way we’re meant to play and experience art.

Access to communal space and experience is a matter of inclusion in the broadest sense. In my life I repeatedly see people who genuinely want to be inclusive, in their playgrounds, their classrooms, their community group, their theatres or art’s events. But they just miss the mark, they tick all the boxes for making spaces accessible but they’re not truly inclusive. And I’ve begun to recognise that part of that is they’re missing something from their understanding of what a shared or communal space or experience is. It’s can’t simply be a space to be with others, but…

A true communal space or experience is one where people can be themselves, together.

This means we need to acknowledge that for a lot of people in society that ‘being themselves’ isn’t something that comes easy. It’s also often not something they can do alone. In talk about how disabled or autistic people need to be ‘part of the community’ people fail to acknowledge that ‘the community’ isn’t a neutral thing. It didn’t form of its own accord with fixed rules and expectations. We all create and maintain them. And some people have more power and ability to influence this then others.

A true communal space is life changing. It’s motivating, it’s energising, it makes you feel valued. I feel it most when I spend time with other autistic people and feel free of needing to censor myself or change who I am. But I should be able to do this in the wider world too. I meet children who’ve maybe never even been able to do this, being with other people is still just something difficult, painful and suffocating. They are constantly compromising and it exhausts them. But it doesn’t have to be this way and i don’t think they should have to wait until their an adult to figure that out. We can work to create these spaces for them as well as ourselves. For me this is about my role as a playworker and artist in helping create these spaces with and for others. It’s also about giving myself permission to seek out those spaces for myself. For you it might be in your role as an educator, manager, arts programmer or maybe your role as a parent, carer, friend or neighbour. I hope reading this has reminded you or the value of that work and perhaps given you another way of thinking about it.

Connecting with people meaningfully means being able to do so as yourself. Creating a communal space means allowing people to be themselves together. How can you do this for yourself and others today?

Untangling “Consulting” with Children

I’ve recently had the opportunity to expand my practice into what was a new area for me; consulting with children.  In some ways it wasn’t new area at all; ongoing consultation with children is a part of my everyday practice; I’m always seeking to get to know the children I’m working with and learning about their interests and needs and, if you work with children you likely do this too, perhaps without even thinking about it in those terms. But when we talk about a “Consultation” we do mean something slightly different, and those differences can make it feel like a whole new and intimidating task.

A Consultation differs from those everyday inquiries in two key ways. Firstly you are seeking specific information within a specific time frame and secondly you are bringing in an outside agenda to your interactions with the children.

Thinking about how to do this in an effective and non-tokenistic way bought up a whole set of questions:

How do you consult with children in a meaningful way, for the children involved and in terms of your agenda?

How do get information that genuinely comes from the child?

How do you communicate what you want from them and… What are you actually asking?

Throughout this work I’ve thought about, explored and discussed these questions and have come up with a few different ways of trying to answer them. These ideas have informed the sessions I’ve designed and facilitated for children and young people so far. These have been for a few different organisations and have been largely focused on hospital waiting spaces and how the child’s experience of this space could be improved but has also been relevant to some work I’ve been doing with a group of children around the play spaces in their school.

When I put all this together I come up with something like a work in progress methodology! Here’s what it looks like:

1.Interrogate your Agenda!

This is my starting point. I notice two big assumptions that we tend to make, especially when asking big or complex questions. And this kind of self-interrogation can help avoid both.

The first is simply that we assume that we know exactly what we’re asking or looking for from an interaction when actually we tend to pile up a lot of superfluous information without even thinking about it.

The second is perhaps a little more complex. It’s when we assume that the people we’re communicating with have all the tools to interpret what we are saying in the way we are saying it. People tend to find it quite easy to switch their communication or language style for younger children, but, when it comes to slightly older children and teenagers’ I’ve seen adults get a bit stumped. It may be that they’re self-conscious or nervous in front of an audience who so often get a bad rep, but I also think there’s an element of conflating explaining things clearly and simply with ‘talking down’ to people. Which isn’t necessarily true.

I start by breaking down what I’m thinking and talking about into as few key concepts as possible. In a consultation this is likely to take the form of questions. If you can keep these key concepts at the centre of what you do and say, then you can make it relevant for any group. Start simple and then build on that if necessary, but often, you don’t need to do this in a formal way. The building and going deeper comes from the unplanned interactions you have during the process.

I find that creating a graphic breakdown is a good way of going through this thinking process myself, and, it’s also a valuable tool for supporting communication and understanding for the children you are working with. For children with learning difficulties and/or cognitive and language impairments having visual communication support can also be essential for access. I draw, so have a nice easy way to do this, but putting together some photos or symbols works just as well, and possibly better in some contexts

Visual Story explaining the purpose of a consultation on Waiting Spaces in hospitals

2. Find ways to make abstract ideas tangible

If you’re asking children to think about something that they can’t see, or touch or hear in that physical space then find a way to link it to something they can see, touch or hear. When you ask someone questions about how they experience something or how they want to experience something then you’re asking them to tap into their instincts about feeling and doing. That’s difficult to do just through thinking, especially for children. For consultations I did around waiting spaces in hospitals I created a ‘waiting space’ in the room using plastic sheets and chairs, it wasn’t particularly complex and wasn’t as effective perhaps as being in the actual space, but it made the idea of a physical space where your sit and wait more tangible to the children in the room. They could pretend that space was a waiting room and then think about what it should be like rather than do all that in their head. My thinking is that this will encourage more authentic responses.

A temporary “Waiting Space” created in a classroom

3. Get them doing

An unfamiliar adult asking a group of children questions, especially when they might be introducing quite new or complex ideas, is potentially quite an intimidating figure. If the children feel under pressure to please or say the right thing, they’re less likely to give genuine responses. Getting the children doing something, and even joining them in that task can help ease that pressure. When children (and probably adults too!) are engaged in a practical and/or creative task you have an opportunity to ask questions and tease out information in a more natural way. The activity/tasks will come from the ideas you’re consulting on, this is an opportunity to be creative and playful. Focus on getting the children engaged in something first and then, when they’re a bit more comfortable you’ll have an opportunity to ask questions.

4. Have multiple ways of participating

Following on from the ‘getting them doing’ point, that ‘doing’ needs to have multiple entry points or ways of engaging. Different children will participate and communicate ideas and feelings in different ways. Building this into your session creates a more inclusive environment as it allows you to facilitate a space with children/young people with a range of needs and abilities.  To do this you can think about scale, perspective and ways of expressing self. If you have a big collaborative creative activity planned you an also set up a smaller version that a children can work on alone or take to a quieter area. If you have an activity planned using written words and images, make sure there’s also an option for children to draw or even record their voices (most smart phones have the ability to record audio). Some children will stick to one thing throughout and really commit to and enjoy it. Some will try everything systematically and some with jump erratically between everything. Having different options and flexibility will make your sessions generally more interesting and stimulating but it could also enable a child to participate who wouldn’t have participated at all if there was only one option that just didn’t fit for their way of thinking or communicating.

Sheet of paper with the words “I want to” written across the top, someone has responded by drawing several bright coloured shapes. You can just make out some writing near the bottom.

5. Ask questions based on the children’s actions

Pay attention to what the children are doing in your session and how they’re interacting with the activity and ideas. Then ask questions based on this and listen to their answers! It’s easy to be really focussed on that information you’re trying to get but it’s more likely to come out in the flow of a conversation where both parties are engaged and listening than an interrogation. Link their answers to what you are consulting about for further questioning.  Always start at the simplest level and then go deeper/more complex as appropriate depending on the child.

It might look something like this;

You: Wow, I love all these animals! Is that a dog you’re drawing?

Child: Yeah, its my dog from home

You: Ahh, do you think people would like to see a picture of your dog?

Child: yes! Animals make people feel happy

It might stop there, or, depending on what your consulting on there might be an opportunity to take it further and investigate that child’s motivation or thought process. But I think you’re more likely to find those genuine bits of insight through this kind of questioning. Which leads nicely to point number six…

6.Prioritise authentic responses over amount of information.

This one is pretty straightforward but is maybe one of the hardest to do, our adult under-pressure instinct can be to push for as much information as possible but try and keep this in mind. You’re there for the children’s ideas and input whatever that is! Record everything as truly and thoroughly as you can but don’t focus on quantity at the expense of authenticity. I’ve also found that things that have maybe not seemed that directly ‘useful’ at the time later become an important part of a bigger picture. It’s also a part of respecting the children you are working with which leads nicely into my final point…

7. Be honest

Find an honest and clear way to explain what it is you plan to do with the information the children are giving you. This is important form an ethical perspective alone but also, if you’re looking for authentic responses from children then this needs to be an honest exchange both ways to work. This is also an opportunity to let the children know that you value their input and ideas.


I wanted to share these to hopefully help others working on consulting with children, but, equally, to open up a conversation. This is still a very new area to me, but it feels exciting and I’m keen to learn and explore more. I’d love to hear from anyone reading this about their thoughts and experiences. Comment below or drop me an email at playradical@outlook.com

Playful Communication: the joys of the ‘non-functioning’

“Communication is about our ability to share our lives with other people”            

Working in play, particularly in disability and additional needs settings, has blown open my understanding of what communication is. The quote above from therapist and author Phoebe Caldwell is, to me, is the best explanation of where I’ve landed. Most definitions of communication I see or hear focus on the imparting and receiving of information, they usually also mention speech and writing as how this can be done. I’m not suggesting these definitions are invalid or wrong, just that I feel they largely miss the point; sharing. Our communication is the reason we are able to exist alongside each other and the effectiveness of our communication is what determines how harmoniously we are able to do this. It’s not just the imparting and receiving of information that makes up communication, it’s that bit in the middle, the bit where you are existing in the same moment as another person and choosing to explore that together. That’s where the truth and joy of communication lies, not in the mechanics, in the sharing.

keith-haring

Painting by Keith Haring

Speech is so often prioritised and seen as the ultimate way of communicating, and, that’s because for many, it is. Speech seems to come fairly naturally to most and from what I understand feels natural too, easy and satisfying. But not for everyone and if you take anything from this post I hope it’s this; speech is not the only way, the best way or the most ‘human’ way to communicate. When I’m able to communicate with someone without speaking I feel at my most content, connected and understood. People often mistake quietness or lack of conversation as a lack of things to express or desire to communicate. That’s not true, it’s perhaps just that talking, to them, is the most natural way to communicate and connect with people and therefore they assume, to everyone. I can speak, often very well, but talking often feels like a means to an end rather than an end itself, it’s for that ‘functional’ bit of communicating rather than that expressive, joyful sharing bit. Writing is different for me, when I’m writing in a way that feels natural it feels much closer to drawing than speaking.

De-prioritising speech is especially important in my line of work. A lot of the kids I work with don’t speak, can’t speak or perhaps speech just isn’t a form of communication that comes natural to them. That’s not to say speech isn’t important or useful, just that it is a way of communication that has no more or less value than any other kind; the way we jump or rock, the noises we make, images we create, the faces we pull, the way we move through and change our environment, the pauses we take to breathe and be, sharing touch and laughter and any other way you can think of that allows us to express ourselves. When kids face challenges in their ability to communicate we put a lot of emphasis on teaching and enabling them to communicate functionally, in doing this we also need to remember that a person’s inability to communicate is equally our inability to understand them. Whilst we create tools and put time into giving a child a way to ask for the toilet or a snack we also need to take the time to notice and respond to all those kinds of communications a person uses as they try to share their world. Ignoring these or dismissing these as less important than that ‘functional’ communication can cause us to isolate people in our attempt to understand them.

One of the many reasons I love working in play is that the play space is an environment where different forms of communication are already valued and recognised. It’s allows for, encourages and often even priorities those non-functional or non-verbal communications. In this way it creates a beauty and authenticity I think we could all benefit from if we took the time to explore it.


Phoebe Caldwell is an author and practitioner who works with people considered to have severe communication difficulties. She uses the technique ‘intensive interaction’ and has written extensively on the subject. Here’s her website where you can find more information including information in ‘easy-read’ formats; http://www.phoebecaldwell.co.uk/