Autistic identity, culture, community, and space for well-being

Review by Katie Munday (they / them)

Dr. Chloe Farahar explores the creation and importance of Autistic identity, culture, community, and space for well-being in their chapter of the same name in The Routledge International Handbook of Critical Autism Studies. Chloe has a PhD in social psychology specifically attempting to improve the dominant discourse surrounding “mental illnesses” (neurodivergences). They are currently engaged in post-doctoral research on the Oxford-led ATTUNE project, exploring young neurodivergent people’s experience of mental health and adverse childhood experiences, through participatory arts-based research.

Autistic identity, culture, community, and space for well-being explores the importance of self and community identification, belonging and connectedness. Chloe posits that many Autistic people distance ourselves from the pathology of ‘autism’ therefore distancing ourselves from the protective factors of community. This leaves many Autistic people in limbo – many of us feel that we do not fit into the neuro-normative world or the Autistic community, which can lead to isolation and poor self-esteem.

Chloe appreciates that ‘the culture of autism’ creates internalised stigma, shame and ableism. The ideas which have formed the foundation of knowledge on “autism” are based in deficit, negativity and hopelessness – no wonder so many of us want to distance ourselves from such an awful fate.

Through Autistic identity, culture, community, and space for well-being Chloe suggests that in the creation of safe spaces – such as their own ‘So You’re Autistic’ community group – Autistic people can find ourselves. In these spaces we can create meaningful connections with others and understand our Autistic embodiment in neutral terms: being Autistic is neither good nor bad, it simply is.

Autistic spaces and communities can be places of growth and healing. They can allow us to combat discrimination together, improving collective and individual self-esteem. These spaces could also work as a way for Autistic people to realise our neurodivergence without needing a diagnosis based in deficit and disorder.

Autistic identity, culture, community, and space for well-being is a great exploration of Autistic culture and a summary of the ongoing move from the pathology paradigm to the neurodiversity paradigm. Adding to work from Botha 2020, Kapp, 2019, Chapman 2020, Dekker 1999, Walker 2020, and many others. This is a must-read.

This chapter can be read for free here.

Neurodiversity! What’s that? An introduction to neurodiversity for kids

Book review by Katie Munday (they / them)

Beige background with a large rainbow infinity symbol. In each half is a child. Left is white child in a red dress with long brunette hair, they are holding a magnifying glass to one eye. Right is a brown child who is shrugging, their head surrounded by question marks. Text reads: Neurodiversity what's that? An introduction to neurodiversity for kids.
(Illustration by Victor Brave)

Written by Nadine Arthur, Neurodiversity! What’s That? is a fun, neurodiversity-affirming, educational book for children aged 8 plus.

Nadine Arthur is an Autistic parent and full time carer of her Autistic ADHD son. She grew tired of professionals telling her about her son’s numerous disorders and searched for children’s books which explained neurodiversity. After an unsuccessful search Nadine decided to write her own!

Through Neurodiversity! what’s that? Nadine introduces children to the neurodiversity paradigm (the idea that being neurodivergent is neutral but that many of us still need accommodations). The book promotes self-esteem and confidence for Autistic and otherwise neurodivergent children (including those who have dyslexia, irlens syndrome, dyscalculia and PDA).

Nadine takes difficult concepts and keywords used within the neurodiversity movement and makes them easily digestible for younger readers. One of my favourite pages was one in which the words disorder, syndrome, impairment and deficit are being thrown into different rubbish bins. The book is full of neurodiversity-affirming words and phrases including ‘there is no wrong type of brain’ and ‘differences need to be respected, accepted and celebrated.’

There is a glossary at the back for more advanced learners, and, despite talking about an overall preference for identity first language, there is a caveat that you should always ask people how they describe themselves.

Neurodiversity! What’s that? is full of positive messages which are useful for neurodivergent children and those they read with. The book allows children to understand themselves and others and how the world can only exist with different people and different neurologies. A must have for younger kids, neurodivergent and neuro-normative alike.

Jacki Edry – Moving forward: Reflections on autism, neurodiversity, brain surgery and faith

book review by Katie Munday (they/ them)

Book cover: a large rainbow coloured water paint design at the centre of a white background. Over the design in black text: Moving Forward. Below in black text: Relections on autism, neeurodiversity, brain surgery and faith. Artwork by Liat Perry.

Written by Jacki Edry, Moving Forward looks to enlighten parents, professionals, and family members with personal insights on neurodivergence.

Jacki Edry is a graduate of Hampshire College and has been exploring the world of neurodiversity for over thirty-five years.  She is a survivor of complex brain surgery and a parent of neurodivergent children. She has spent many years advocating for inclusion programs in the educational system within Israel, as well as providing support for Disabled children and their families.

Moving Forward is an auto-biographical account of raising Neurodivergent children and surviving complex brain surgery all the while becoming closer with God and her Jewish faith. The book is split into five parts; Autism and neurodiversity; Sensory perception and processing; Brain surgery, faith and healing; Regeneration and recovery; and Navigating new pathways.

The first two parts are a reflection on Jacki’s Neurodivergent children, their journey to diagnosis and support within school. Of particular interest was her children being misdiagnosed with ADHD. After many years of research and advocacy, both children were re-diagnosed with Irlen Syndrome, a visual processing difference in which the eyesight is considered typical but the processing of visual stimulus is not. This story acts an example of how the first (and easiest?) answers and diagnosis, are not always accurate. Jacki herself was then diagnosed with Irlen Syndrome and the children were diagnosed as Autistic.

Jacki gives some good advice for families of people who are newly diagnosed, my favourite of which “one of the most important things you will need to do after receiving a diagnosis is to take a deep breath. Take some time to digest the news. […] I suggest you leave the ‘why’ behind and focus on doing your best to support each other and to investigate your next steps together.” (page. 24). Jacki appreciates that there can be some extreme feelings after confirmation of neurological differences and that the first move is to let it sink in.

The second half of Moving Forward reflects on Jacki’s experience of surviving complex brain surgery. She shares excerpts from her personal diary, where she reflects on how her sensorial changes have given her more insight in to her children’s sensory processing differences. Jacki also explores how she solidified her Jewish faith whilst in recovery. I feel dispersing the diary entries throughout the stories of her children’s burgeoning Neurodivergence would have made Jacki’s reflections stronger still.

Moving Forward is an intimate account of one women’s experience of brain surgery, parenting neurodivergent children, and living in God’s light. Jacki shares her intersecting experience of disability and neurodivergence, parenthood and healing, and those who read it are all the better for it.

[Person first and identity first language are used throughout this book, as are words such as ‘impairment’ and ‘problems’. These may be a translation issue as they do not fit with the overall feel of the book.]

Meghan Ashburn & Jules Edwards – I will die on this Hill

Book review by Katie Munday (they / them)

[Trigger warning: talk on filicide, suicide and death.]

Book cover: cartoon illustrations of Meghan, a white person, with long blonde hair, thick framed glasses, wearing a black hoodie. They are stood back-to-back with a light-brown skin Jules, who is wearing a black low-cut t-shirt. They are against a green grass back drop, with a slither of light blue sky at the top. Yellow text reads: I will die on this Hill: Autistic adults, autism parents and the children who deserve a better world. Artwork by Nathan McConell (Growing Up Autie).

Written by Meghan Ashburn and Jules Edwards, I will die on this Hill looks at the struggle between Autistic people, ‘autism parents’ and the children who often get caught in the middle.

Meghan Ashburn (Not an Autism Mom) is an educational consultant, trainer and writer, passionate about helping schools create more inclusive and accessible environments for children.

Jules Edwards (Autistic, typing) is an Indigenous Autistic mother of Autistic children, passionate about sharing knowledge, healing trauma, and building community in alignment with her cultural values.

Nathan McConell (Growing Up Autie) illustrated the front cover and pictures of individual chapter writers.

The book collects brilliant reflections from some of the most important people in Autistic advocacy and activism including Kieran Rose, Kristy Forbes, Tiffany Hammond, Cole Sorenson and Danny Whitty. These are sprinkled throughout the book, between Meghan’s and Jules’ chapters, under headings such as ‘The Worst of Each other’, ‘Let’s get to Work’ and ‘Where do I fit in?’.

Meghan and Jules reflect on the division between Autistic activists and ‘autism mums’ through their own relationship which began with consistent and often strained (mis)communication. Through this persistent need to teach and learn with each other Meghan and Jules were unwittingly creating a template of how we can all work together to protect and champion the lives of Autistic children. So, they wrote a book about it!

There are too many good parts of this book to list but I wanted to highlight two particular favorite chapters of mine, Cara and Danny Whitty’s chapters. Cara wrote of how her ‘mother’ struggled with looking after her Neurodivergent children and how this ultimately ended with her killing her son, trying to kill her daughter and then herself. This chapter is a brave confirmation of the very real harm that Autistic people face, often from within our own families. Cara finishes her chapter by saying “if you ever feel like you can’t parent them [your children] safely, get help.” (p.172). There is no shame in needing or asking for help, parenting is beyond overwhelming and difficult and we all need support some times.

Danny Whitty’s chapter was just as eye-opening, he wrote about the pathology around autism and being non-speaking and how this “harms whole families, not just the Autistic individuals. It deprives them of the opportunity to fully know and love their Autistic family member. Which is a tragic loss.” (p.114). Unfortunately, ideas such as ‘curing’ Autistic people are often filtered down to parents who believe autism to be a big baddy taking over their children. This can be worse still for Autistic people who have different ways of communicating and do not get their communication needs supported.

The writers throughout I will die on this Hill do not shy away from the interconnection of autism and trauma, they understand that being Autistic is another part of human diversity which comes with both unimaginable struggle and deep joy. Intersectionality is reflected on throughout the book, especially Jules’ Ojibwe heritage and culture.

I saw myself reflected in these pages, from Morenike Giwa Onaiwu’s view of being Autistic as neither good or bad: just being, to Kimberly Collins’ experience of being shut-down by other parents in parent groups due to being Autistic. Autistic and non-Autistic experiences of activism and support groups are explored critically, appreciating that they are equal parts powerful, frustrating, intimate, bleak and empowering.

I will die on this Hill can be read in stages and makes a great reference book, with key points and resources at the end of each chapter. I would recommend this as a go-to book for Autistic people and those who love and support us.

I will die on this Hill is an important – and sometimes difficult –  book to read. Meghan, Jules and the other writers look at our history of infighting and explore how this doesn’t help any of us. The writing is insightful, personal, intersectional and brutally honest.

Hopefully, this book marks a rise in all of us working together against the real enemy of oppressive, racist and ableist systems which hold us down whilst asking us why we can’t do better.

“Our children think autistically, feel autistically and live autistically.”

Meghan Ashburn, p.118

Functioning burnout: can’t stop, won’t stop

By Katie Munday (they / them)

So many of us Autistic folk struggle with burnout – the extreme fatigue which comes from sensorial, emotional and mental overwhelm.

This can cause us to shutdown – some of us can be in bed for days or weeks on end, incapable of functioning at our usual level of activity, finding everything mentally taxing.

Many of us can’t afford to succumb to shutdown and her alluring siren call of isolation and inactivity. We have to surge through and somehow keep ourselves together.

This is especially difficult for those of us who have lots of responsibilities like raising young children and working full time. We just have to put our heads down and get on with it.

I have been in burnout for four months now, probably even longer. I am getting on with the day to day but I am well and truly overloaded, exhausted and floating around doing things purely by muscle memory.

I am struggling with basic self care, remembering to eat and drink, brushing my teeth, showering. It used to be that I was ashamed of all these struggles but now I just remind myself that it’s really hard to exist sometimes, so much so that the basics sometimes have to slip.

I know I’m not alone with my state of (barely) functioning burnout, so many of us are there right now, especially with the global pandemic, times of austerity and diminishing protections for Disabled folk. We are dazed, confused, exhausted by it all.

For others who are feeling this way: you’re not alone and you’re not broken. You are doing so amazingly well in a time and place which has been turned on its head.

We will come out of this phase, because that is all it is, a phase, and that means things will get better.

And for those of you who aren’t in burnout at the moment check in on your friends (even your non-Autistic ones!) because you never know when that might save someone from complete shutdown.

Autistic theories of Autistic experience

Find here explainer videos about the three Autistic-derived theories of Autistic experience: Monotropism theory (Dinah Murray), Double empathy problem (Damian Milton), and Autistic language hypothesis (Rachel Cullen):

Monotropism explainer video by Kieran Rose (The Autistic Advocate):

Double-empathy explainer video by Kieran Rose (The Autistic Advocate):

Reviewed by young people, double empathy explained:

Screenshot of the webpage from Frontiers for Young Minds: “Double Empathy: Why Autistic People Are Often Misunderstood”

Aucademy discussion on the double empathy problem from theory (Damian Milton), to evidence it occurs, to evidence of why it occurs (Rachel Cullen):

Aucademy discussion on the Autistic language hypothesis with Aucademy’s Rachel Cullen, educating Chloe and Annette:

Aucademy discussion explaining the monotropism theory with Fergus Murray & Tanya Adkin educating Aucademy’s Chloe and Ben:

De-centering the ‘male’ Autistic experience

By Katie Munday (they / them)

Historically, being Autistic was considered a male childhood experience, with boys more readily diagnosed than girls. This trend is still prevalent in many areas of autism research but thankfully the gap between male and female diagnosis and realisation is slowly closing. As is the access to diagnosis and realisation for transgender, non-binary and gender divergent individuals.

There have been many reasons why many girls and women have been overlooked for diagnosis including (but not limited to); systemic misogyny and transphobia, autism research which favours ‘male’ traits and cultural gender stereotypes.

Systemic misogyny and transphobia

Misogyny across medical systems, which upholds ideas of female ‘hysteria’ and over-emotionality, means women are more likely to be disbelieved or wrongly diagnosed with personality differences and mental health issues. These diagnosis can then cause access issues to Autistic identification.

Professionals are not seeing the very real connection between what would be considered ‘disorders’ (what I prefer to call embodied self-preservation) and Autistic experience, which often includes consistent trauma. So, even when females are diagnosed with personality differences they are often overlooked for also being Autistic.

Access to diagnosis is also difficult for transgender and gender divergent individuals who wish to transition medically. Often these people are left to choose between being supported with their Autistic diagnosis or gender affirmation, but very rarely are they given the opportunity for help with both. Unfortunately, Autistic people are still seen as children who do not understand gender and therefore are not ‘really’ transgender. This infantilsation denies Autistic people gender affirming healthcare and many forgo an autism diagnosis so they can get help with the more immediate need of living their authentic gender.

Many people turn up to gender identity health clinics because they are confused by their gender and need help untangling it all, some of us live in gender flux and fluidity and this confusion should never mean punishment. All gender experiences are relevant, and all people should have access to gender affirming and diagnostic healthcare, this means creating more support for people of colour, queer people, physically Disabled people and all other marginalised groups.

Autism research which favours ‘male’ traits

Across 70 years of autism research the most researched group of people have been young white males. This means that all criteria for diagnosis, and the supposed ‘support’ which comes with it, is based on ‘male’ behaviours. Anyone who does not present these traits are not considered Autistic and may be misdiagnosed with another form of neurological difference.

The very few Autistic people who fit the stereotype of Rain Main and Sheldon Cooper have the privilege of far fewer barriers to diagnosis. However, girls and women, transgender and non-binary folk and males who do not show these traits are often overlooked as we do not live up to the standard of male stereotyped Autistic traits.

This is further complicated for those of us who are people of colour, physically Disabled, Queer and trans because our social ‘difficulties’ are often understood as a common ‘impairment’ of our other marginalised identities. This is a glowing indictment of the racism, ableism and queerphobia within medical systems but also within places of education, work and anywhere else we are seen as being ‘problematic’ or ‘too much.’

These male stereotypes are based around white western ideals of behaviours; giving eye contact, staying still, keeping quiet, but ideas of ‘appropriate’ behaviour vary across different cultures. There are many indigenous cultures, for example, which deem eye contact as incredibly rude, but this is not accounted for in white western medicine.

Autism research has focused on male stereotypes for so long that the idea of a ‘female autism phenotype’ has arisen. Not only does this create even more barriers for those of us outside the binary but it also continues to other female Autists, favouring males as the ‘real’ Autistics. (I could, and probably will, write a piece on the ‘female phenotype’ but I lack the spoons to write about that particularly misogynistic, racist and transphobic idea at the moment).

Cultural gender stereotypes

Criteria for diagnosis, which favours males and is steeped in misogyny, are based on the undeniable inequality that all of us who aren’t cisgender male face.

Girls and women are often overlooked as Autistic as they often (strangely!) fit western female stereotypes. Many of them are either quiet: “she’s so shy!” or very talkative: “they’re quite the chatter box!” These vast differences in communication, confidence and the need to talk are both seen as inherently female: potential non-speaking or hyper-verbal traits are often considered as just a ‘girl thing’ and therefore often overlooked.

In many Western cultures, girls are kept young, virtuous and innocent for as long as possible. This can run parallel with the interests of Autistic people who often stay loyal to their hobbies for longer than their neurotypical peers. This is often misunderstood and pathologised as developmental regression but it is just the lack of fear we have about enjoying what we enjoy loudly and proudly!

Heteronormativity also plays a big part in gender stereotypes; girls are to grow into women who have children with a man and keep the household. Girls are explicitly and implicitly told that they are to grow up to be the main caregiver of children, do all the housework and most times squeeze in a full or part time job. Due to this many women are exhausted beyond measure; this is considered a cultural norm and does not consider neurological differences.

As we know, burnout between neurotypical people and Autistic people are vastly different, add in the overwhelming responsibilities placed upon women and we are sure to suffer poor mental health. Unfortunately, these cultural norms feed into misogynistic medical systems, which suggest that mums simply need to ‘rest more’ or pop a few Xanax and carry on exactly as they are. There never seems to be any understanding that this burnout is due to being Autistic, as well as living in a garbage heteronormative world. Less still can it be seen for what it often is: an Autistic person raising other Autistic young people in a world that is simply not made to support or enrich us at all.

So how can we de-centre the ‘male’ Autistic experience?

Firstly, challenging oppression benefits us all and this is in no way a fight against men and boys who also deserve diagnosis, support and acceptance. I want to create a world in which we can all reach understanding and support earlier in our lives.

Unfortunately, systemic misogyny and transphobia, focusing on ‘male’ traits and cultural gender stereotypes are all reciprocally determinant, they reinforce each other and are a difficult cycle to break.

Difficult, but not impossible.

Change won’t come overnight. It comes from the writings of brilliant Autistic academics and those of us who continue to put pressure on politicians and policy makers, the advocates and activists who show up every damn day to fight our oppression.

No contributions from any of us who stand up to oppression is small – we are all part of a bigger movement to change systemic ableism, racism, transphobia and bigotry. We can change things through our anger, through our writing, for showing up for one another, through social media, protests, pride events, Autistic run conferences, supporting Autistic artists, activists and writers.

These acts can and will invoke change so that the Autistic kids of tomorrow have more of a chance at Autistic joy, pride and acceptance.