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 shields, Autistic communities

By Katie Munday (they / them)

I have spent most of my life creating and maintaining a shield for myself (see Autistic realisation and shielding). It allows me to protect myself from toxic neurotypicality – the insistent need for society to make everyone comply to the ideals of the neuro-majority.

The shields are protective, some of the time they are unconsciously created and sometimes they are more of a thoughtful struggle to maintain. Sometimes they are created alone and sometimes they are created together  – Autistic communities often make shared shields which protect and validate all of us lucky enough to be underneath them. In these safe spaces we can talk honestly and in a manner that suits us, we can stim, tic, behave and present ourselves in authentic ways. Community shielding isn’t just about making friends with others it’s about making friends with ourselves too, especially for those of us who have experienced trauma and those of us who are new to our Autistic realisation.

These shields allow us a space to explore our neurodivergent embodiment. The way we think, talk and fit into a world which is not set up to support or validate us. Shields are used in community building, they are safe places where we can come together, create and recreate ourselves, look after each other and challenge ideas of neuro-normativity.

Community and individual shields are cyclical, we need them to feel safe and joyful but the more we need and seek these, the more we need the shields. Shields aren’t always easy to create or maintain and they can become faulty during times of intense stress or burnout. They are a useful tool, but they can be exhausting to maintain. Creating shields with other Autistic people means we can share the load, allowing us to look after our mental health and stamina. 

This is particularly important during intense bouts of advocacy and activism – when one of us can no longer hold our part of the shield someone with more energy can take our place. We can replenish so that we can once more contribute through writing, speaking, protesting, sharing information and challenging policy makers. These shields are made up of all sorts of people with different experiences and skills, and we are all the better for it.

Grace Liu – Approaching Autistic Adulthood: The Road Less Travelled.

Book review by Katie Munday (they / them)

Approaching Autistic Adulthood book cover. The Title sits in the middle in large blue text. The Road Less Travelled is written underneath in purple. The cover is a mix of purple, yellow, green and blue hues. There is a faint white capital A which takes up most of the cover, the A has road marks on it

Approaching Autistic Adulthood: The Road Less Travelled is a personal development book written by Grace Liu. Grace writes about the musings, memories and mishaps of a bi-racial, Autistic, lesbian writer regularly on her blog Unwritten Grace.

The book shares informal advice, observations and anecdotes on Autistic experience, talking from Grace’s own experience and from those of her Autistic friends. The book is split into well defined areas which flow well together; explaining autism, overload, friendship, romance, dating and sexuality, college and university, the working environment, being out and about and bullying and disrespectful behaviour. There is even a handy guide on metaphors used throughout the book. I especially enjoyed the section on college and university as it gave quick checklists for moving house, including skills you might need for living independently. Grace also wrote about the support which can be gained at UK universities as well as talking through her experience with her Graduation day, which was very sensory and socially overwhelming and gives advice to other Autistic people on their graduation day.

The chapters on friendships and relationships was also very interesting and gave good advice for creating and maintaining healthy relationships and boundaries. Grace writes on how consent and boundaries work both ways and how we must respect the boundaries of others as well as ourselves. She also makes the point of asking this question of ourselves: “Do I have the mental capacity for being surrounded by people right now?” for us to try to avoid shutdown (what Grace calls power saving mode). Checking in with ourselves is an important way that we can create our own boundaries.

Although I enjoyed Approaching Autistic Adulthood, it is very difficult to understand who the intended audience was. It is both advice, a collection of stories and anecdotes, educational and self-help. A clearer sense of the genre would make this book at lot more accessible.

Overall, Approaching Autistic Adulthood was a fun read which seemed to find its pace and story a little later in the book.  It was lovely to read others experiences, lots of the information and story sharing was very validating for me. Grace writes in a very straight forward way with lots of humour, her work is very nice to read and is quite accessible.

Having read some of her other work, I would love for Grace to write a book about being an Autistic, bi-racial, lesbian within the Christian faith and community – it would be very interesting to read something at length on this.

I look forward to seeing what Grace writes next.

[This book uses both person-first and identity-first language, as well as Asperger’s. Grace explains: “I mainly use identity first language and I only say Asperger’s when talking about my diagnosis or some other context where that word was specifically used”]

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.

Book review by Katie Munday: Standing up for myself by Evaleen Whelton

[Front cover of Standing up for Myself. The background is made up of pastel pink, blue and yellow triangles arranged haphazardly. At the centre is a white square with the title in big blue lettering. A green character with short, bobbed hair, green shorts, t-shirt and trainers is leaning up against the title, pointing towards it with their left thumb over their shoulder. They have a small shy smile under big green eyes]

Standing up for Myself is a book for Autistic young people about boundaries, personal space, consent and power play written by Evaleen Whelton, an Autistic teacher who educates on Autistic experience and culture through their companies AUsome Training and Konfident Kids.

The book presents lots of information on Autistic differences inter-weaved with workbook style questions and advice for young Autistic people. Standing up for Myself champions Autistic identities and differences whilst acknowledging that there are many people and systems in the world which do not look favourably on Neurodivergent people.

The book is split into several sections looking at personal space, consent and power play and how a young Autistic person can spot and navigate these situations in their lives. The section on consent was particularly powerful, giving clear advice to young people on how to give and gain consent if and when they want to.

Another favourite part was a workbook page which allowed the reader to put all the times that people took their own stuff out on them into the big “not my stuff” bin (pictured below). This is a wonderful tool which helps the reader to understand that others people’s behaviours are self-projections and do not reflect the morals, behaviour and personality of the reader.  

[The workbook page entitled Not my Stuff. The page is white and has the following text at the top in black: How about you take a bit of time now and put all the time that people took their own stuff out on you into this big “not my stuff” bin. A grey-scale picture of a metal bin with a lid is at the centre of the page, a white rectangular sign on the bin reads: Not my stuff.]

The language used throughout Standing up for Myself is very well thought-out and complex ideas and processes are explained in a thoughtful and accessible manner. Evaleen shares her own examples throughout to make the reader feel more confident in exploring their own experiences.

The only thing which could make this book even better is giving readers enough space to explore in a way that is most comfortable to them. Creating more gaps between the workbook sections – or making it clear that readers could take it at their own pace – could make these sections less overwhelming.  

Standing up for Myself would be incredibly useful for Autistic children and young people everywhere and would make a brilliant resource for KS2 and KS3 educators. Evaleen has created a safe space for Autistic children and young people to explore their differences and struggles, allowing them to create their own ways to survive and thrive in a world which is often very confusing and overwhelming.

Autistic realisation and shielding

By Katie Munday (They / them)

Since my Autistic realisation, I have been able to make more sense of how I fit into the world. I can now make more sense of strange experiences and interactions in my childhood, teens and early twenties: what it seemed to others that I had done wrong, subtext I completely missed and things I was supposed to be interested in.  

I spent 25 years not knowing what was going on, in a flux of confusion and high empathy but also low interest and nonchalance. I was alone but very rarely felt lonely, it was only when I mixed with others that I just didn’t get it. I wasn’t interested in others, I found their subtext frustrating, I just wanted them to be clear with me but when I was clear with others I was called arrogant, rude, blunt and harsh.

I’m at peace now as I finally know the truth – that I live in a completely different culture and world to most others around me and that is totally fine by me.

One of the things that struck me during my journey of Autistic realisation (I’m still on by the way) is that sometimes confusion also comes from other Autistic people and within wider Autistic communities. Some things for me just don’t fit, the idea of masking or camouflaging is a big one. I have been told indirectly many times that all Autistic people mask, especially if we are unrealised in childhood – we mask to fit in, to make life easier for ourselves and to survive in a world that isn’t built for us.

I find the word masking difficult because it suggests that I can play a part and hide away consciously with a fair amount of effectiveness, and that has never been my experience. I suppose I have been lucky, or maybe I just happened to be in unrealised heavily neurodivergent spaces, I believe my scout group was one of those spaces. I have always been very proudly weird from a family of other proudly different people. I was brought up to follow interests and passions which aligned with who I am as opposed to who I was supposed to be. That doesn’t mean life hasn’t been difficult and that I breeze through all social and sensory interactions flawlessly, far from it. It just means that my behaviour has never really been convincing anyone of anything other than what I am.

I don’t mask, I shield.

I have a force field, a membrane by which I can (usually) decide what comes in and out of my inner world, this shield protects me from the confusing bullshit of neurotypical people and allows me to work and live relatively happily within systems which are not built for me and my kind.

The word shielding conjures up images of sorcerers protecting themselves from incoming attack – and I think that is a near constant thing for Autistic people and our communities. It’s the subtle microaggressions we hear every day; ‘everyone’s a little Autistic’, ‘you don’t look Autistic’, ‘oh but you go to university!’. The patronising way that Autistic adults are treated like children and Autistic children are treated like burdens.

We shield to keep these awful things out as much as we can, but we also use shielding in a more positive manner. My shield, like a membrane, is two way, I decide who and what I allow into the inner sanctum and protect myself from the viciousness of the world. There is an immense amount of joy to be had within my shield; stimming, following interests, talking deeply about things and being truly unique.

When I get home, I can lower the shield, as my home and my family are my inner sanctum, there is just no need for the membrane at that point. Coming home and taking down the shield, is like taking your shoes (or your bra!) off, it is immediate comfort.

My shield is brilliant, but it’s taken a long time to build, and it still becomes faulty sometimes – it requires a lot of maintenance which I don’t always have the spoons to keep up. There’s an awful lot of toxic neurotypicality out there to shield myself from but also a great amount of Autistic joy and pride to keep safe.

Book review by Katie Munday: Just Right for you: A story about Autism by Melanie Heyworth and Celeste Josephine

Just Right for You: A Story about Autism. Artwork by Celeste Josephine Art.

[Image description: The front cover of Just Right for You. The title is in large purple and black lettering against a background of light purple and blue clouds. Underneath the title are five characters standing on blue-green grass. The first character has large curly ginger pigtails, they are wearing blue dungarees and are jumping in the air. The second character is sat on the floor reading a red book, they have short black hair and are wearing round black glasses. The third character is sat in a manual wheelchair, they are wearing an orange t-shirt and blue trousers and are holding a brown teddy bear in their lap. The fourth character has large brown curly hair, a pink dress and pink headphones. The fifth character is a large blue and purple fluffy being, they have large floppy ears and a large teddy bear like belly. All characters are waving and smiling at the reader. Purple lettering underneath show the writer and illustrators names]

Just Right for You: A Story About Autism is written by Reframing Autism founder and CEO Dr Melanie Heyworth and illustrated by Celeste Josephine Art. These Autistic creators have made s visually stunning and insightful book brimming with Autistic pride and passion. The illustrations throughout are beautifully ethereal and capture the essence of Autistic oneness with the sensory realm.

Just Right for you is a gorgeously illustrated book helping Autistic children to understand and champion their differences by following four Autistic children and a very sweet looking blue and purple fluffy creature. These characters talk about different elements of Autistic being including the way we think, communicate, play, feel and sense.

The characters remain nameless but represent different experiences within the Autistic community, such as a child who wears headphones / ear defenders and a child who is a wheelchair user. Just Right for You explores the needs and strengths within the Autistic community without judgement and in very clear language which suits the age / stage of readers. I especially enjoyed the communication page as it represents the importance of communicating with your hands, AAC, echolalia and palilalia. I also loved the penultimate image:

[ID: A blue purple fluffy creature with floppy ears hanging down by the side of their face. They are holding a giant love heart in their hands which is mottled in pastel rainbow colours. They have a large smile with closed eyes and are surrounded by different coloured smaller hearts, in the shape of a love heart.]

Just Right for You is a book which allows Autistic children to understand their beautiful Autistic brains. It is refreshingly affirming to Autistic children and adults, and I wish all Autistic people could experience the inclusive principles expressed in this book more often.

The only thing I would like to see from this book is a version which uses Widgit symbols, I know a lot of young people and adults who would benefit from that mode of written communication but I’m sure that is something which may become available in the future.

Just Right for You: A Story About Autism is so touching I genuinely got emotional for the younger version of me who would have found this so wonderful. I look forward to sharing this book with my son as he grows and will be recommending this too many of the parents, carers and young people I work with. So that they know that their brain is just right, just for them.