Beyond Acceptance: Autistic Joy Roundtable
This our first NDC in Conversation, a new long-form blog + video format where we bring together diverse voices from the Neurodivergent community to discuss key topics. You can also watch the the full video of this discussion below or, on our Youtube Channel.
For this inaugural discussion, held to mark Autism Acceptance/Awareness Month, El Dewar is joined by Kay Aldred, Adam Fare and Charli Clements to discuss Autistic Joy.
At Neurodiverse Connection, we're responding to Autism Acceptance/Awareness Month with content looking at how we can go ‘Beyond Acceptance’. Check out the other Beyond Acceptance articles on our blog.
Q1. What does Autistic joy mean to you?
Adam Fare:
The word joy is sort of quite a meaningful word for a lot of people. For me, I see it more as just accepting who I am and the way I am as a person, the emotions I have or don't have. I think the main times of joy is when I'm actually talking with other Autistic people and we sort of bounce off each other, that’s when I come alive. But in terms of the day-to-day joy, it's more my acceptance for myself.
Kay Aldred:
Yes, I feel really passionate about Autistic joy, because joy was an emotion that I didn't feel until probably five years, six years ago. And I'm a lot older than you. It took me longer to get there. I feel really emotional even just talking about the concept of joy because it is our birth right. As humans of all neurotypes, our joy is our wellbeing. I think joy is a very internal experience. Happiness is quite externally stimulated, but joy is something you bring, it opens out of you. I get really emotional when I talk about this. Autistic joy is a beautiful type of joy to watch and see because generally it's highly expressive (although not for everybody). There's often a lot of movement with it. So, whereas we might stim to regulate, we might also stim in our joy and feelings of belonging. There's not many places that I feel safe enough to be fully expressive in my joy without wondering ‘how much can I express about how passionate I am about that’? For me it's a very inward experience and it took me a long time to get to a nervous system state and non-trauma state to even feel that I had that real expression in me.
El Dewar:
I think that in the Autistic community, so many of us grow up and are late-stage diagnosed or, like me, are self-diagnosed. So many of us spend years asking ‘what's wrong?’, repressing and masking. And when you find that community, when you find that joy, it's like a well of hope. It's a well of support that we haven't had. And I think that's one of the wonderful things about the Autistic and wider Neurodivergent community and Neurodivergent movement.
Q2. Can you share some moments or situations in your life when you experience that feeling of autistic joy?
Charli Clements: I think the main example for me is with live events that relate to my special interest. So certain theatre performances, concerts are a big one. I've been to live gymnastics because world gymnastics is one of my special interests - It’s a bit rogue, but there we go! Even though I find those environments quite overwhelming and I need quite a lot of adjustments to engage with them, once I'm accommodated and comfortable in that environment, it's very all-encompassing. It's the sensory experience, as well as engaging with the interest itself and being amongst other people who are interested in it in a way that you're not normally. For me it’s like stimming or info dumping – my interests get to come to life in a way that they don’t when I am just sat at home. Being in these situations brings it to life.
ED: It’s when you meet those other people who are as interested in your specialist interest as you are, and suddenly you're talking at 200 miles an hour and everyone else around you is wondering if you've just learnt a new language. I go to gigs quite a lot, particularly death metal and punk gigs. They're really sensorily intense environments, but (once I've got spaces that I know I can escape to if it gets too much) it becomes a place of joy and of celebration. It's almost a healing experience to have that joy in that way of expressing the things we love. I wonder if we might talk about the embodiment of joy and how that feels?
KA: For me, embodiment is the well of joy in our body, the well of our being and our true authentic, unmasked self. And for me it feels like something that moves upwards through the body. It's a kind of warm space in the heart, but it also goes beyond that. And I don't know how often we see it in Autistic adults—or even in Autistic children. It feels like joy is not particularly prevalent in our society, anywhere. But I congratulate the Autistic community in their expression of Autistic joy, modelling to the rest of humanity that there's a possibility that we can uncouple from the low vibe of society and come into joy.
We may act differently, but we all have an amazing, significant, integral part to play in in this diverse and functional society that we are striving for.
— Adam Fare
Q3. How can embracing Autistic joy help us move beyond the idea of acceptance and be used to support Autistic rights and stimulate progress for the Autistic movement?
AF: We want to go beyond acceptance. We want advocacy, we want justice and liberation. That's what we need to be aiming for. I'll admit that I'm still on my personal journey to find that real joy. Life circumstances have meant I can't get there yet. But I think seeing others who have that and seeing those people speak up and be brave enough to talk about it, that empowers others to talk about it too. And whilst I don't think society should need people within the Autistic community to talk about it for them to get onboard, I think it is required with the way society currently is, because it is - 'we don't see it: we don't care about it’. If you're only accepting someone, you're not actually empowering them, you’re not giving them the justice that they deserve, not even giving them the equity they deserve. You can accept someone for who they are, but not give them any adjustments and accommodations or anything to actually help them become their best self. I think by embracing the idea of joy for whatever it means for each individual, it allows people to come out of their shells and show their true selves, which then empowers others to do the same, which then actually makes the rest of society see that we are just people who think differently. We may act differently, but we all have an amazing, significant, integral part to play in in this diverse and functional society that we are striving for.
We see all this horrific stuff in the news about disability, about Neurodivergence, about oppression, about marginalisation of communities. That is a smokescreen to what is actually happening which is that we are on the on the path to progress. It's just the minority shouting louder because they don't like that privilege being challenged. So the more we can shout and the more we can advocate and empower each other, we will overcome that. It will be a bit rocky, but we will overcome it.
…and then we get into inspiration porn: “this person might struggle, but look how many degrees they've got!” And as somebody with quite a few degrees, my degrees do not help me go to Sainsbury's by myself on a Saturday morning!
— El Dewar
CC: For me, it's that society is so insistent that Autism has to be this ‘deficit’ that we've got to cure, that we've got to get rid of that we should not be enjoying. “You should not be proud of it, it has to be gotten rid of” or it's this “superpower” that we have to use in the workplace to boost productivity, to capitalise on it. And it can never be just this middle neutral diversity. We aren’t allowed to just be. It has to be one binary or the other. I don't agree with that at all. I talk a lot about neutrality and I personally love being Autistic. But even if I didn't, there's so much more nuance to the conversation beyond it being one way or the other.
I think with Autistic joy, it's about people understanding the importance of it, the uniqueness of it and understanding that wider ‘spiky profile’ concept. There's nothing wrong with our spiky profiles in comparison to a neurotypical peer in terms of our skills and our needs. Autistic joy is really part of that. And with support that can be such a huge part of a really fulfilling lovely life to live. But we're not given that at the moment. We're so rarely given that opportunity and the support to make that really lovely thing. At the moment it is masked, or seen as childish, or considered something that you shouldn't be engaging with. But actually in a better society and in a more fulfilling society, it would support us to engage with education and hobbies and interests and all of those things that at the moment we are often so pulled away from because we're not allowed to just be who we are.
ED: I think coming off that there's a big issue around not being allowed to be mortal: it's either the ableist concept of “you must be so disabled, you must not want to be alive”, or “you're so superhuman, it must be wonderful to be you”. And then we get into inspiration porn: “this person might struggle, but look how many degrees they've got!” And as somebody with quite a few degrees, my degrees do not help me go to Sainsbury's by myself on a Saturday morning. So we can use Autistic Joy to say that yes, we have issues, yes we have problems that can be very disabling (I think one of the things we see sometimes in the Autistic community is ‘Autism isn't disabling’, but for me, yes, it is), but we’re not superhuman either. And I think it is really important to just be mortal, to have joys and have days that are bad. Joy for us is about being glad that we are alive and glad that we have our specialist interests and building a community around that.
KA: As an ex-teacher, one of the main goals of the education system, in my experience, is to quash joy—particularly embodied joy—in all Neurotypes. But particularly the neurodivergent expression of joy is really hammered out once you go to pre-school. I spend a lot of my time envisioning what education could be like if we base it on enjoying and following the trains of our interests, thoughts, impulses and longings. And I really believe we can have a functional learning environment based on themes or topics that people bring and spark off. It can happen, but it requires thinking outside the box within the educators and creativity – which is the landscape of joy anyway.
Q4. How could we make Autistic joy a wider community action?
KA: Love is the common thread of belonging. When I'm in my Autistic joy, I'm connected and my heart is like Wooosh really big now. I take that in and it happens to me daily. It's happened to me today. I take that into an environment where there are non-Autistic people and within I can feel now straight away what that does to me, to my heart. I'm perceived as different and it closes down, I shrink and I compress. So how do we take this into communities and belonging? We have to ally, we have to link our arms and, and the hold tight that we're able to stay in our joy. To become this force that pushes it out, to push down the forces that want to close it down. It comes back to what Adam said, it's a liberation action. And liberation can only happen in community and that’s holding each other tight as we move forward.
AF: I completely agree with you Kay. I think the first step is we need to try and help bring others along in the journey with us. Non-Autistic people, the people who are ableist but they don't know they're ableist. They are the people who see the fact I’m Autistic as a superpower. So I'm a big fan of sort of what I call grassroots movement. We need to build from the ground up. Sometimes we have to advocate for ourselves as well and actually just stick our heads above and just go - this is me, like it or not.
Because if you go, this is me, someone else will also feel safe to go - this is me. And then you've already built a community who can then come together and you realise there's a lot more in the community than perhaps you first thought. And so that's how we click with each other and I think by building that community from the ground up, you almost force everyone else to come along with you because you show them that actually there's nothing wrong with who you are. It naturally breaks down the barriers when you come together and when you are unapologetically yourself.
Yes, we need more than acceptance, but the first step is acceptance. The first step is that people are accepting who we are because then they will start fighting with us, not for us. We don't need people to fight for us but people to fight with us. I don't want someone to speak for me. I want someone to speak with me. I think that's what we need as a community.
ED: I was thinking this earlier about a comment that you made about inviting people to the table and that at the moment people are being invited to the table. But it's almost like we'll invite you to the table, but woe betide you if you need a gluten free meal. And what we need to get to is the point, where it's not it's not your presence at the table is tolerated, but woe betide you if you need something different. It needs to become more a case of welcome to the table, who are you and what do you like to eat?
CC: I think for me, a big part of this is meeting people where they are and helping them undo internalised ableism and lateral ableism. I think the community has a big problem with lateral ableism and I think we’ve all been guilty of it at times in our journey, where you've spent so many years of nobody understanding you. Actually there is a whole community of people that either get it or get it to an extent or want to meet you where you are. But it's very hard to open yourself out to that.
We have a lot of lateral ableism about different support needs. We get lateral ableism because, as an Autistic and chronically ill person, I'm often saying actually that advice or that system is not going to work for me because these things clash. I need this instead, and people just can’t relate to that. They just don't feel like I am welcome in that space. I think really meeting people where they are to undo that and understand liberation and understand that wider community outside of where they're coming from. It's very hard to find an untraumatized Autistic person. So, there's no real wonder that people are coming to the table feeling the way that they're feeling. But I think meeting them, feeling like we can support them to undo that and being open to constantly learning.
Q5. What would you say to someone else, or to your younger self, struggling with feeling Autistic joy?
KA: Oh God, go slower, go slower! Don't believe the Neurodivergent community is going to be like you. Or give you a role model, or a pathway to follow and also people's hearts aren't open. Charli, I wish I'd spoken to you more, also because I’m chronically ill as well and I don't go out that much. Don't think just because you're unmasking and then take yourself out, you're going to be met with acceptance and belonging. So I don't mean to be negative, but it's I think it's that's realistic in society. I hope someone can offer something a little bit more positive, than that.
CC: I think for me it's understanding again how much you actually have to uncover and understand in that pre-identification, diagnosis or whatever. You've been under so much pressure to be someone else that it makes total sense as to why this wouldn't come naturally. We talk about late diagnosis and stuff and obviously for some people that is much longer than others. But for whatever amount of time that's going to be a lot of trauma and a lot of pressure. So, it makes sense that this wouldn't just come naturally one day. And I think going slow, going gradual, starting to just unpick the things that you have control of and that make you happy. And just kind of going from there - doing these things with people who feel safe, who understand you, who will accommodate you, who will get you out of a situation if that's what's needed. Having that sense of safety, although it isn't something that is inherent, it is something that you can begin to build, whether in your community or with people around you or just within yourself. Autistic joy is a very all-encompassing, intense feeling, so it makes sense that it’s not going to be immediate when you're in a body that's been traumatised and under pressure.
AF: I'll go back to the first moment I burnt out, around 11 or 12, which is where all my issues started. And first thing for me is find where you feel safe, the people you feel safe with, the activities you feel safe doing. For me it's all about safety and finding your community. Don't just find the Autistic community, find your community within, as the community itself is quite a monolith sometimes and can have some very binary viewpoints within it.
Be kind to yourself, there may be a form of grieving process, especially as you find out, you’re not the person you thought you were. All the things that you thought you could do, you might not be able to do. Just be kind to yourself within that.
I think it all links to safety—feeling safe and being safe. If you can find that safety, not all the time, it's not always going to be safe, but if you can find that safety to go to when you need it. I think that's the main thing.
ED: So I think what it all boils down is that Autistic joy is a catalyst and a place that takes us somewhere where we feel safe, where we feel supported, where we have that community, and something we've come back to again and again is that having Autistic joy is a place where we can love and we can feel loved.
