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.
Abstract/ summary: Clinical impressions suggest a significant overlap of Autistic and transgender / non-binary identities. Most of this work focuses on prevalence rates and the perspectives of non-Autistic cisgender professionals and parent / carers, leaving the narratives of trans Autistic people overlooked. This study aimed to share trans Autistic narratives to contribute to knowledge around our lived experiences, as well as creating recommendations for future research in this area. This study represents findings from interviews with thirteen transgender and / or non-binary Autistic people (ages 20 to 50). Of interest was the way participant’s expressed their intersecting identities through narrative methods and what recommendations they would make for future research on transgender Autistic experiences. Participants spoke about a variety of life experiences including mental health issues, making and maintaining relationships, future aspirations and experiences with employment. Participants also gave recommendations for future work, including diversifying participant pools by ethnicity, age, physical disability and gender identity, as well as participatory approaches which include gender divergent Autistic people at all levels of study.
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.
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.
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):
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.
[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.
I was asked in early 2021 to come up with a short lesson anyone – Autistic or their loved one – might need to know when they first look into Autistic experience. Given there is so much prejudiced and inaccurate information out there about Autistic experience: what are people looking for? What do they need? What would help them?
“[I was] looking for an educator, someone to guide me through the feelings/emotions I was going through and to try to normalize those feelings.”
“Wanting to find out you’re not alone.”
“Checking for similarities.”
“To know that it’s not scary to be Autistic.”
“The correct information to be aware of and finding the community.”
“Find your folx.”
“[t]he different ways one might react to finding out they’re Autistic… I thought I would feel relieved, but that wasn’t my first reaction. I really struggled with all the different feelings and lack thereof that I went through.”
“How to communicate your needs to other people.”
I discussed this with Annette, and through the patterns and similarities of our own discovery journey’s and that of the large number of Autistic people we’d supported, worked with, or were friends with I recognised a pattern and called it “Six common reactions during Autistic discovery”.
Most Autistic people we meet express experiences that relate to one or more of the six reactions outlined below, and we move through them, skip some, get stuck at some, and/or go back and forth while we progress on our life-long journey of Autistic self-discovery.
Whether discovered Autistic as a young person, in adulthood, or elderhood, or potentially revisiting the knowledge that you are Autistic some years after initial discovery, we all seem to experience one or more of five reactions: Denial; Anger; Bargaining; Depression; Acceptance (detailed further down the page).
It is always my hope that every Autistic person reaches the sixth experience – Embracing – in their discovery journey. We work very hard to help Autistic people we support get there, but part of reaching the sixth experience involves leaving behind the “autism community”, the “autism spectrum disorder” narrative, and the idea that you are a “person with autism”: to recognise yourself as a wholly Autistic person.
This means first knowing, finding, and connecting with another narrative, and other Autistic people so that you are not pathologised and isolated. This is very difficult to do if the dominant narrative, services, education, media, and so on pushes the “autism community” pathology narrative.
And so, come find us. Come find your fellow Autistic people. You are not alone. You most certainly are not broken. In the community you can gain support to work through your reactions of discovery, and hopefully come to embrace your au-somely Autistic self.
This model was created to help Autistic people feel heard and validated that whatever thoughts and feelings they have about discovering they’re Autistic, others have experienced them too. This isn’t about grieving one’s Autistic-ness, but holding space, without judgment, for those of us who may experience negative thinking and feelings about our discovery, and hoping to help people move toward embracing their Autistic selves. There are also those of us who experienced only positive thoughts and feelings about our discovery. And due to being complex human beings, there are those of us who have experienced both negative and positive responses.
All reactions, responses, thoughts, feelings, & stages when you discover you’re Autistic are valid. Keep in mind these reactions are not linear, & you may experience one, many, all of them, or none, & at different times, or experience them simultaneously
Six common reactions during Autistic discovery – the journey – Dr Chloe Farahar
Denial (imposter syndrome; I don’t do *that* thing, the diagnosis/discovery is wrong)
Anger (re-evaluating life and events; anger at the injustice of being invalidated for Autistic behaviours and experiences; perhaps angry at the autism)
Bargaining (Fine, I’m “high functioning”; “I’m only a bit Autistic”)
Depression (or is it Autistic burnout? – masking/shielding is exhausting; taking control of your mask/shield)
Acceptance (OK, I *am* Autistic – but receiving mixed responses from other people when I disclose)
BONUS: Embracing (your Autistic identity; having confidence in your Autistic identity, and connecting to the culture and community in Autistic spaces – allowing yourself to be authentically you, not a masked/shielded NT version)
Learning your personal profile – sensory, social, emotional, communication, cognition
The use of identity-first language to describe our Autistic selves, or be described by non-autistic people, is not up for debate with non-autistic people. But time and again it is demanded that we Autistic people – not “people with autism spectrum disorder” – provide “evidence” for the use of identity-first over person-first language.
Even more frustratingly – angering even – is that professionals do not expect the same level of “evidence” for the use of person-first language when interacting with Autistic people.
And so, find some resources here to demonstrate both preference for identity-first language, but more importantly the psychologically protective properties of being an Autistic person, not a “person with autism [spectrum disorder]”.
Some people around young Autistic people will say they asked their young person about their preference – to be referred to as an Autistic person, or a “person with autism [spectrum disorder]”, stating that they went with their young person’s preference for person-first language – or even that the young person didn’t care about it.
The above scenario is not an acceptable reason to ignore the politics of a young persons’ life. Absolutely language should not be forced on the minority in question – but that does not preclude you from learning about the importance – the psychological and political importance – of identity-first versus person-first language regarding yourself, your young person, the people in your care, in your class, in your employment.
And there is growing evidence that humanising us via identity-first language and the surrounding, far greater Autistic community and cultural narrative, actually improves psychological wellbeing of Autistic people – a population where the greatest cause of death is suicide. And so, any help our community can get to reduce early deaths and a life of prejudice and discrimination should be deeply and critically considered.
That you were taught that person-first language is what you should use is no longer an acceptable response when told otherwise. As Dr Nick Walker says: “Sentences that start “person-first language is what I was taught to use” should end with “but now I know better & will never use it again”.
Be the change you want to see, importantly, be the change we desperately need. Thank you.
These psychologically protective properties are somewhat demonstrated in Chris Bonnello of Autistic not Weird‘s latest survey with 11,212 respondents (7,491 of whom were Autistic, including non-speaking Autistic people), which demonstrated that those who identified as Autistic were more likely to like being Autistic, compared to those who considered themselves to be “people with autism”:
I was very excited when Jessica Kingsley Publishers announced another new book on transgender Autistic experiences, collected, edited and written mostly by people who are both trans and / or non-binary and Autistic.
Working with Autistic Transgender and Non-Binary people: Research, Practice and Experience (edited by Marianthi Kourti) collects personal stories, research and guidance to inform the understanding and practice of professionals who support us. This book collects the writers of highly regarded activists, researchers and writers including Damian Milton, Wenn Lawson and Lydia X.Z. Brown, as well as some up-and-coming writers sharing their own stories and reflections on current understandings and research.
The book is split into three sections looking at theory, working practice and lived experiences. The first section outlines overall Autistic experience research, including ideas of double empathy, infantilisation of Autistic people and trans exclusionary radical feminist rhetoric. This section also challenges stigmatising and harmful ‘autism’ research, with the usual suspects called into question.
Kielsgard and Brown’s chapter Trans, Autistic and BIPOC: Living at the Intersections of Autism, Race and Gender Diversity sets out a nuanced understanding of intersections which can affect trans and / or non-binary Autistic people. Intersections include non-binary motherhood, transphobia and ableism within trans communities and systemic oppression of people who are multiply marginalised. This chapter challenges systemic ableism and racism and rightly suggests that gender variant Autistic people should at least be collaborators within support services, research and writing about our experiences.
The second section sets out advice for professionals working with trans and / or non-binary Autistic people, imploring practitioners to reflect on their own beliefs and biases around neuro and gender divergence. This section touches on support needs, gender neutrality and Autistic experiences of gender norms – suggesting that identities often change over time. Lawson makes several good points in this section including the importance of listening to stories which are being told now as apposed to worrying about possible detransition. He also suggests that detransition can be an important part of someone’s gender journey and that the reasons for gender divergence is not ‘as important as the need to have our stories heard and for the right support to be available for the individual’ (p.111).
The third and final section is a collection of personal stories from across the gender spectrum. Pountney’s story was especially illuminating as she reflects on her attempts at emulating neurotypical ideas of masculinity and points out that transitioning into another oppressed group is not always ‘empowering’. Pountney also speaks on masking Autistic characteristics to gain access to gender identity healthcare, which unfortunately reflects the experience of a lot of Autistic people who wish to access medical transition.
There are some issues with clunky language with some writers talking about the experience from an outsider point of view despite occupying the space they speak of. They also missed an opportunity to direct professionals to non-academic trans autistic lead work and organistions. The personal story sections would benefit from content notes – there will be many of us reading this book who have had similar experiences and content notes would be very helpful, especially when we are feeling particularly vulnerable.
Overall, Working with Autistic Transgender and Non-Binary people: Research, Practice and Experience outlines professional practice in a helpful way focusing on the safety, comfort and needs of supported persons. It takes an activist stance which uses identity first language and follows the ideal of ‘nothing about us without us.’ Working with Autistic Transgender and Non-Binary people: Research, Practice and Experience would benefit professionals, academics and people who are interested in this important intersection of human diversity and plays a small part towards breaking down systemic ableism and transphobia.
Katie Munday (they/them) was diagnosed Autistic in their late 20s. They have worked with Autistic and Disabled children since 2012 through nursery work, social groups and sports clubs. Katie is currently studying an MRes in Gender Studies – their research aims to collect and represent first-hand experiences of transgender and / or non-binary Autistic people. Sharing these stories has been a long-term passion of Katie’s as they appreciate that they are an important part of human diversity. Katie reviews books for Routledge Publishers and also contributes to an LGBTQIA+ Autistic blog called AIM for the Rainbow. They are also a new mum and in their spare time (!) they enjoy anything to do with wrestling, drag, D&D, fantasy and comic books. They can be contacted on Twitter and Facebook under the name Autistic and Living the Dream.