autisticltd Uncategorized

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.

autisticltd Book Reviews, Uncategorized

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.

Aucademy Aucademy Uncategorized

Six common reactions during Autistic discovery – the journey – Dr Chloe Farahar

[Feel free to share this blog and “Six common reactions during Autistic discovery” by citing: Farahar, C. (2021). Six common reactions during Autistic discovery. https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/ ]

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 did a bitesize live stream on Aucademy and asked the educator-learners in the comments “What were *you* looking for when you realised you were Autistic?”, and a number of educator-learners wanted to know, learn, and/or work through things such as:

“[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.”

Through the patterns and similarities of my discovery journey’s and that of the large number of Autistic people I’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

Shareable infographic of the six common reactions of Autistic discovery.
  • 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)
ALT TEXT: Flow chart of self-advocacy: Self-awareness; Knowledge of rights; communication; Leadership. ALT TEXT ENDS.
Image from: https://cokidswithbraininjury.com/parents/self-advocacy/

I hope you find “Six common reactions during Autistic discovery” useful. Let us know on Aucademy which experience you’re at and what has helped in your discovery journey.

[Feel free to share this blog and “Six common reactions during Autistic discovery” by citing: Farahar, C. (2021). Six common reactions during Autistic discovery. https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/ ]

Autie gang group picture: a group of audience members standing on a stage in a semi-circle, with a PowerPoint slide behind them which reads “Autistic”
Where before we were isolated by our belonging to the group “people with autism”, we come to embrace the Autistic identity, culture, community, and space – we are no longer alone, we are connected – connected by one word: Autistic.
[from “A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person)”]

We also discussed the six common reactions in an Aucademy session, watchable below:

Recorded and originally aired: 19th of February 2022, 19:00 London GMT; 11:00 PST:
The six common reactions of Autistic discovery: Chloe & Annette educate Aucademy