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Neurodiversity as social justice in the church

Originally published 13.10.19; presented as part of Thinking Differently conference. 



Neurodiversity is the diversity of human brains - it’s a biological fact. Humans are not all the same in many other ways - like our skin colour, hair colour, interests, strengths and talents. How we process the world is another way in which we differ. The sort of brains that would be considered as ‘neurodivergent’ include for example:-  autistic, ADHD, dyslexic, dyspraxic, Tourettes.

Ways in which we might process the world differently include - our sensory experiences, processing times and how we communicate. Some examples of this include that we might struggle to access Written materials because they’re cluttered, too small or don’t make sense to us. We don’t know or don’t understand what’s expected, or what’s acceptable according to ‘normative’ standards. And there’s the mystery that is reading body language or neurotypical social cues… All these might be easy for you, but for us it’s like being in a foreign country where we can never learn the language.

We’re blamed for being different, as though thinking differently is a choice.

This weekend can be seen as part of the neurodiversity movement. This is a social justice movement working for equality, inclusion and respect, including in the church in this case.

This weekend is needed on many levels. It’s needed for the neurodivergent people in our churches - it’s needed for those who have been hurt, misunderstood and/or excluded by churches and church communities in them in the past. Historically, churches have not been accessible to neurodivergent people: whether through worship groups who will not turn their music down, or overloading welcomes, through hurtful preaching that tells people they need to be cured, to become “normal” to be acceptable in the eyes of churches - and of God.. It’s needed by churches so they can hear the voices of these perhaps hidden marginalised, to stand with them as Jesus did. Often we, as neurodivergent people, won’t have the energy or the words to say how something is not inclusive or accessible. So if we are hurt or have a negative experience, we just don’t come back to that church.

For inclusion to go beyond the surface and short term, we need to have meaningful conversations.. My own story is one smattered with misunderstandings, hurt and tears. But for the last 3 years I’ve been working in my own context, to try to make a difference and to get people to think differently . But as a colleague said at Kent Autistic Pride last month, ‘the story remains the same with different contexts’. It’s time to change, to learn and to turn the tables on what church is and how it is accessible.

Creativity, self-expression and 'autistic space'

Originally published 19.6.19. Submitted and published in GradPost. 

At the end of April (Autism Awareness Month), the university hosted the second Autism Arts Festival, a biennial event organised by Dr Shaun May from the School of Arts. This event celebrates autistic creativity and is a fully accessible space where autistic/neurodivergent artists can exhibit their work. The festival encompasses a wide variety of genres and media, including both professional performances, book-readings, talks and artwork of many types as well as open mic sessions for attendees to present and perform their own music, comedy, poetry or songs. Building on the inaugural festival two years ago, this festival added an artist development day before the main festival, which ran workshops and panels by established autistic artists to support the work of emerging talent.

The festival also created a range of interactive experiences for autistic people of all ages and support needs to enjoy. This included a sensory circus, Makaton storytime, and Sparklies in the Dark (unstructured sensory play for people of all ages using UV light and glowsticks). Other highlights included relaxed film showings, an all-night Avengers marathon, autism research as explained through photos of cats and the phenomenal Annette Foster’s ‘Super Autie Gang’ performance which explored uncovering what it means to be a late diagnosed autistic person and the finally finding out ‘who you really are’.

The Autism Arts Festival is also a space for autistic people to simply meet up with each other and make new friends. It’s a common misconception that autistic people do not want friends, and while research has reported that autistic people can often have ‘smaller social networks’ , this is usually caused by being misunderstood and stigmatised by our non-autistic peers rather than a lack of desire for friendship on the part of the autistic person. There is a dearth of opportunities for autistic adults to meet each other in Kent, and people travelled to the festival from as far away as Scotland, Wales and Germany. Since many of us are not diagnosed as autistic until adulthood, we have often experienced a lifetime of social isolation before we find this vibrant community. To discover that there are other people who think and experience the world in the way we do is the most incredible joy. Many autistic people (including the authors of this article) take great comfort from making friends, contacts and connections, with other autistic people from all walks of life, it can feel like finally coming home.

Where such opportunities exist for autistic people to come together, this has become known as  ‘autistic space’. However ‘autistic space’ does not only provide an opportunity for people to meet each other. ‘Autistic space’ can also refer to a space for autistic people to convene and ‘just be’ without the pressures and constraints that might be expected in ‘non-autistic space’. ‘Autistic space’ involves us being able to be who we are, without the expectation or need to cover up our differences to meet social norms; for example by forcing ourselves not to stim*, or by faking eye contact, to avoid a ‘spoiled identity’ as Erving Goffman would call it. ‘Autistic space’ allows for us to explore more authentic versions of ourselves, which is political act in itself when we are daily faced with living in a society which sees us as defective. Autistic people are stereotyped as difficult, challenging and awkward; we are branded as looking weird and acting strangely but from our perspective, it is often the non-autistic people who are challenging. The research increasingly supports the theory that this social mismatch between autistic and non-autistic people works both ways. A popular analogy in the community is that autistic people are like cats and non-autistic people are like dogs; a cat is not a defective dog, a cat is simply different to a dog.

Another key factor of ‘autistic space’ is that fact that it is a dynamic entity. Autistic people coming together create such a space, and we need to ‘learn’ how to be in such a space. This is because it involves personally deconstructing how we act in social spaces, and being more aware of when we are hiding who we actually are (known as masking). Most of us have grown up without such space or peers who understand the lived experience of being autistic . Most of us are also used to being judged and we may not even realise the impact this has on our quality of life and mental health. Whether we knew we were autistic or not, we have had to hide who we truly are.

Therefore, the crux of ‘autistic space’ is a sense of belonging; this is a recognised psychological need (Baumeister & Leary, 1995). Meeting people who despite being from all various walks of life, cultures and backgrounds, still share many of the same internal lived experiences is the most profound joy. The authors and many other autistic people within the university and far beyond will look forward to many more festivals like this in the years ahead.


You can follow the authors of this article on Twitter at @krysiawally and @autgeek.

*Stimming - informal term for self-stimulatory behaviour. All humans have self-stimulatory behaviour, for example clubbing once a week, however stimming by autistic people is often perceived with a higher stigma attached, for example rocking, hand flapping, using a stim toy (e.g. a fidget spinner), playing with hair. This helps us process the world around us.

Lent lunch: challenging our perception of a 'welcoming community'

Originally presented to Bearsted Methodist Church as part of their 'Lent Lunch' series. 29.3.19. 

This differing perception in autistic people is around two main areas: differences in how we communicate, and differences in how our senses work. It’s important to say at this point that the way we perceive the world is not less, or broken, or deficited. It just is.

This is probably where I will break away from what you are expecting me to say, or would like me to say. But this is all necessary when considering supporting autistic people in a church setting. The weight in the language we use influences our view of autistic people, which inadvertently influences the support we give. We can’t help it, we’re human. You might think it’s just words, but I would argue that words have power.

And this idea that autism is a spectrum - yes it is. But I do not believe it to be a linear spectrum, where we compare how disabled people are with each other. Functioning labels are problematic - they stem from eugenics and judge upon outward appearance, when being autistic is such an internal experience. Autistic writer Donna Williams (1996) spoke about this in her book Autism – an Inside-out Approach: An Innovative Look at the Mechanics of Autism and Its Developmental Cousins, yet is so greatly overlooked. I prefer and encourage the use of the term ‘support needs’, which is much more holistic and fluid in its meaning and acknowledges that some support needs are not external.

Autistic people don’t have a look or always appear to be a certain way. We are not all white, male and children. We aren’t all computer nerds. We aren’t all robotic in speech and we are not all uninterested in people. Research has found that autistic people do want friends, even if these friendships look different. Being socially included and belonging is a need we all have, irrelevant or our neurology, it might mean though that it might look different in multiple ways. And if we want to bring theology into it, it’s the people that make up the church, and ministers and theologians have commented that a church is an empty church without disabled people. This shows how important the meaningful inclusion of autistic people is in our churches.

And I guess meaningful inclusion is part of the answer to the brief I was originally given, of ‘how to support autistic people’. There is not one size fits all in how to support autistic people, because some of our needs are not all the same and we have not been socialised in the same way. Some of us might also have a learning disability, some of us also have a specific learning difference like dyslexia, some of us have other mental health needs. Autistic people do not sit in a box on their own, autism is highly intersectional. That’s some of the reasoning why you cannot fit us into a categorised box, however that doesn’t answer the question of practical things we can do. That’s what I know people are after. However, practice and ideas are intrinsically linked so they need to be looked at together.

For example, the sensory environment of a church might be one aspect that may be difficult for some autistic people. It might be noise, smells or bright lights. With the move towards ‘relaxed cinema performances’ I am surprised that churches have not seen the benefit in looking at the sensory environment. But it’s not that alone which needs tackling - no, because we all have different sensory needs. And this is where it gets confusing. It requires getting to know the individual autistic people that might come into your church, and the wider congregation, and making ‘church’ welcoming for them. This isn’t around preferences, as many people do assume in the first instance. This is around needs and distress. You wouldn’t tell someone with a broken bone to stop making a fuss. This is the same.

It is physically painful and jarring to be overwhelmed by sensory input. It’s not like your typical pain, it’s a completely different sort which words cannot do justice to. It’s nothing like pricking your finger or breaking a bone. I've broken bones, so I know what I'm talking about.

This is where communication is important and finding out what what adjustments are needed. And I say adjustments purposefully, as accommodations hints that autistic people are outsiders of the church, and that it is not their church. Communication might be with autistic people, our families or people who accompany us to church or our friends. Out of this communication may come many solutions or things to try: members of churches helping families out, adapting Sunday school materials or activities, having an order of service so people know what to expect, relaxed services… This is maybe what I was supposed to say and perhaps what was expected. This outcome will look different in each case. We need to remain open in our perspective and thoughts towards disabled people as a whole. We are not less, nor not of value in the church. Sadly many of us have been hurt before by poor thoughts and poor theology, where people have tried to help but it has backfired. I know I have been. It’s pushed me, but I refuse to leave as I’m stubborn and know the record needs to be set straight.

And this is maybe the most important thing which I think can help welcome autistic people, neurodivergent / disabled people, among other groups of people: reflection on how we think about people and how this impacts our action. Because it does. Maybe now is time that we need to look at what we think of autistic people - all autistic people, as I cannot possibly represent everyone - and challenge notions that autistic people are to be pitied on, are less, are broken. If we are all made in God’s image, as in Genesis, then surely we should take that on board. How much of what we consider to be human is what society tells us, or what Jesus tells us through sentiments like ‘love your neighbour’? And love isn’t just patting someone on the head, rather love means the hard work of looking at multiple options. This sounds very utopian, and I’m very aware of this. It is hard to always include everyone. But I would like to posit the challenge that we need to try out of love, which is a responsibility and a command for Christians. Sometimes it might mean us asking for help from other autistic people or our allies (which are always a good port of call). Sometimes it might involve tapping into our own networks we know. Sometimes we might not get an answer immediately. Sometimes we do. Sometimes we need to use a mixture.

I’m not your tokenistic autistic to help your EDI data, but I am committed to getting churches into a place where those who have been excluded, not just limited to autistic people, to feel more welcome. I’m committed to challenging the status quo of why this might be, even if it makes us uncomfortable. For after all, being a Christian is not easy, neither is it supposed to be. I know not everyone will agree with me. I don’t expect you to. However I also know that church is supposed to be for everyone who wishes to go, and not restricted by attitudes of other church members or goers. And this self-reflection and understanding of what inclusion and love is, is so vital to welcoming autistic people.

Connecting co-production and religious groups: TTFD

Thought for the day originally published 17.3.19

I have to admit when I was planning this thought for the day I was a bit stumped what to focus on, and given the monopoly that Brexit is currently holding in our conscious, I wanted to steer clear of it. The fact I have a particularly strong opinion on the matter also impacted this decision.

Amongst the current news items, I remembered an article I co wrote with two fellow students at the University of Kent, Lily Dedman and Kyla Greenhorn, on why disability history month is important to us. Disability history month is an annual selection of events, often held in universities. The idea behind it is the struggle that disabled people face when fighting for equality and human rights. In our article we wrote about the commonalities in our experiences as disabled and/or neurodivergent students. We are not disabled in the same way, however we all face barriers which are thematically similar, including a lack of understanding, being ‘pitied’, seen as ‘an inspiration’ for just living and being, and our fight for equal access to various aspects of society.

This got me thinking. Where do religious communities, and communities associated with belief systems in general, fit into this dialogue? I mean, we have straplines broadcasting that we are ‘inclusive’, ‘welcoming’ and ‘open to all’. But are we really? And if we are saying these things, are we saying these things because we are ‘inclusive’, or because we want to be? Are we checking with those we are saying we are welcoming, that they too feel welcome? I can’t help but ask these questions of the situation, both as an academic and as a neurodivergent person who has experienced exclusion myself in various scenarios.

Taking a Christian slant on it, I think Galatians 3:28 is pretty fundamental in teaching about inclusion: ‘There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus.’ Therefore if we are all one, we should be seeking to make sure that all are heard and all who wish to access and participate, can. I also think we can take it one step further. We can engage with, and actively listen to, the voices of disabled people and their experiences of Church and community. Rather than try and squeezing everyone into a ‘bums on seats at 10.30 am with band at front’ approach, we can re evaluate what we mean by church and self-inspect our attitudes towards disabled people, as research reports attitudes of others impact experiences of church. If we are all one in Christ, then therefore we need to evaluate dynamics of power and the attitudes we hold towards others.

In the article I co wrote with Lily and Kyla, we wanted to present the ‘disabled voice’, or in plain English, put our words onto paper and get ourselves heard as a collective. Communities associated with belief systems need to listen to the voices and experiences of disabled people, and truly take them onboard, for a tentative first step towards a complete body and community expressed on Earth.

Researching autism as an autistic

Presentation on 'researching autism as an autistic' to UKC FemSoc December 2018

Being an autistic researching autism

I think a good place for me to start is introducing myself. My research area is exploring autism in differing faith communities. Interestingly, I have neither a psychology, nor a sociology background. Many people assume I did a degree in psychology when I tell them what I do. I firstly trained as a linguist (German and French), and after a few failed jobs that I realised did not fit me, and were slowly killing and breaking me, and too many failed job applications, I went and spoke to my former disability advisor from my university. It was his suggestion...: 'Krysia, have you ever considered doing a masters in autism?' At that point, I was completely against the idea of further study through doing a masters. But this felt different. So thanks to him, I managed to talk my way onto the masters course I did and found the field of autism and faith communities I am so passionate about.

Considering my experience as an autistic researching autism, here are the four key areas I have broken them up into:

• barriers faced
• emotional labour
• being an unintentional activist
• questions of identity

Image description: the four areas I conceptualised impacting my experience as a researcher
1. Barriers faced, 2. Emotional labour and myths, 3. Being an unintentional activist, 4. Questions of identity

(c) krysiawally, 3rd December 2018 for UKC FemSoc

I will take each area in turn and delve into some of the issues and complexities that arise under each area. I could say much more under each part, but will stick to key parts in my experience: 

Barriers faced
Communication and expectation differences can lead to misunderstandings from mentors and colleagues, as we, as autistics, do communicate in a different manner and the communication of expectations is part of this. The viva is one massive fear of mine, given the level of grilling and amount of non-verbal communication that occurs in oral exams, when you could whack me round the back of the head with metaphorical non-verbal cues and I'd totally not notice. I personally am quite scared of the majority of people as I really do not trust anyone. I guess this also links into the next point: academia has an incredibly interpretative and subjective nature, given the huge role of peer review as a means of quality control and that others might bring unconscious biases unintentionally. In a field where communication of a certain type might be misunderstood, paired with the subjective nature of academia, does not always bode well.

Not everyone wants to tell others they are autistic: it is massively stigmatising (when I'm of the opinion it should not be). I am lucky in that I do have supportive supervisors, however it can be pot luck. As I have mentioned before (and will do again), the university system is not always the most flexible to the needs of disabled and/or neurodivergent students... Reasonable adjustments might not always be what is necessary or sufficient in some cases - rather what it actually thought as necessary or cost effective. There's also the thing of different people having a different view of what is 'reasonable', and also that I know from my own experience I have no idea of some reasonable adjustments I could have asked for.

Emotional labour

There are various myths that exist regarding autism and autistic people, of which some in academia seem to be down to autistic people to overturn and challenge, leading to emotional labour (having to point out the obvious to you). There's these recurrent ones that linger in academia of autistic people as white-het-cis male, therefore as a homogenous group. Pfft. The representation of autistics is often incomplete and fragmented, and some demographics missed or neglected, for various reasons (recruitment can be difficult, as any researcher or student including myself can tell you, but sometimes we don't think outside the box enough or are too constrained by these things called time or money - all poor excuses). 

I also have an issue with defining people on contribution to society alone through the usage of 'functioning labels', as they harp back to eugenics (quantifying who is worthy of life through their value to society). Through us using these labels as researchers, we reinforce wider society's usage of these terms. I completely get how difficult autism is to define, but we really need to take a stock check where the terminology we use comes from and what connotations it has. (Maybe this leads onto us reapproaching how we define autism?) Linked to eugenics, the currency that ABA (applied behaviour analysis) has in the behavioural research community and teaching in autism at some universities. I will leave ABA to another blog another time, given it's problematic nature, questions of power dynamics and poor study quality, however I feel my stance, both academically and personally, is quite clear.

Being an unintentional activist

For some people, just being faced with an autistic face to face as an academic peer can confront their perception of autism and autistic people. Often we are seen as 'people who are researched on', not those who 'do credible research' or 'sit face to face with researchers as equals'. Some only see autistic people as children, or those in supported living, or the stereotype of white-cis-het-male who can't xyz. This can be said for some academics and policy makers, where autistic and other groups may not always be a part of the policy making process, rather what is deemed appropriate at that time and moment, with no input from said groups. Just from being present and demanding equity among some individuals is challenging and potentially uncomfortable, and that's just the act of being a researcher, let alone the ideology you might have or your research topic.

Questions of identity

There are various questions surrounding identity that can be opened through study of a topic that brushes so close to you that it is a part of you. Here are the three I thought of while planning:

• My identity vs. society’s perception of autistic people 
• My identity vs. prevalent academic understanding of autism
• My identity vs. broader autistic identity in the autistic community

Finding where I fit in all of this and my own position on things, rather than just aimlessly following any particular group, leads to further critiquing and finding out what I actually think and believe about things. (Looking to the group I was presenting with --) I can say each one of us has had to discover who we actually are and have all been on a journey. I add, for me at least, it is not only the reading and critiquing of academic literature that has formed an important part of my journey, but also meeting other autistic academics, students and well-read people and our allies. I love to listen and question why people think the way they do. Since our voice is not always so present in the world of research, conversation and discussion has been a way to find some of the debate and encouragement I have craved. 

Thought for the Day

Originally published 3.9.17

Dearest readers

No doubt you've been relinked by me to read this. Underneath is my thought for the day for 3.9.17. The Square Pegs film I talk about is linked here. I am in no way affiliated with Square Pegs, but was very much touched by this and this helped inspire and give the final "push" to this piece.

tc

-krysiawally

Thank you Mike and thank you for asking me to do thought for the day today! I’m used to talking for much longer so I hope I can keep to time. While I was considering what to talk about, yesterday I was at the Tizard Centre yearly conference in Canterbury and the short film ‘Square Pegs: This is me’ was shown. It is a short film exploring young people’s stories and experience of difference and ended with a song. One lyric of the song stood out to me: I’m different and I’m perfect - and it clicked, not only what I wanted to share but also into some of the other thoughts I have recently had and shared on my autism blog, which is funnily enough 1 year old today.

Different, unique and perfect in our creation is how we were created. As Genesis 1:27 says, God created man in his own image, thus meaning there is not one group of people of individuals that are made more in God's image than another group. Not only does this encompass ethnicity or gender, but neurology and difference, which here does encompass and include autism. An an autistic person I find this comforting in a world in which can dictate to me that I am less, I am broken or I am wrong. It comforts me that though I may feel this and that I am in fact one part of the reflection of God’s people here on earth. God is beyond anyone we could imagine - he surpasses boxes and society’s constructs.

Jesus furthermore presented an antidote to society’s distaste for those who were dirty, broken or imperfect through his mere choosing to be with these people. It makes me think, do Christians encounter and engage with disability in the way that Jesus did: open arms, listening to them, letting them decide what they want him to do in terms of company and healing and treating everyone with respect. Do we do that? Surely an aspirational model, but actually one that we should aim towards.

Going back to the Square Pegs film, I can imagine Jesus having tears rolling down his face as the young people spoke: speaking of isolation, bullying, misunderstanding, not been seen for the amazing and unique people they are, with a myriad of interests, hobbies and talents. Without a doubt. Jesus most famous teaching is for us in John 13 - Love one another as I have loved you. Part of showing love is breaking through the stigma and judgement and seeing people for people. Treating with compassion, empathising through listening and learning and not showing the same front as other parts of society may do.

I don’t think the church talks about disability and difference enough and speaking as an autistic person, I yearn for the day that the church truly stands up for those society sees as less and beyond and hope in my academic work I can help this happen.