AUTISM RESOURCES
“I get a lot of messages from people who have received an autism diagnosis and are struggling with what that means, or who think they might be autistic and want more information and reassurance.
Unfortunately I can’t respond individually, but hopefully these resources will help. They are by no means comprehensive, but they should make a good starting point if - for whatever reason - you’re on a journey of self-discovery.”
Katherine
The Electricity of Every Living Thing is my memoir of the year I learned I’m autistic.
US Edition, published by Melville House
UK Edition, published by Trapeze
Resources
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Autism
Autism is a neurological difference that affects how people interact with and experience the world.
You might notice challenges with or differences in:
• Sensory processing (being more or less affected by smell, light, touch, sound and taste than the general population).
• Social life (finding social situations challenging, or feeling different from others).
• Emotional perception (for example, finding it difficult to understand your own feelings, or feeling overwhelmed by strong emotions or empathy).
• Intense interests and fascinations that feel central to who you are.
• Anxiety, meltdowns and shutdowns (extreme distress caused by everyday experiences).
• Executive function issues (see below).
• Autism often co-occurs with other neurodivergent conditions, such as ADHD , dyslexia, and dyspraxia, and physiological conditions such as hypermobility, epilepsy and gut problems.
It’s worth noting that some of the features of autism - such as anxiety - may be due to the lived experience of autistic people, rather than being intrinsic to autism itself.
The Autism Spectrum
Autism is not one, consistent experience. Instead, each autistic person is unique. The term ‘autism spectrum’ does not refer to people being ‘more’ or ‘less’ autistic (as is commonly thought), and neither does it suggest that ‘we’re all a little bit autistic’. Instead, it points to the range of experiences within autism.
Asperger Syndrome
This used to be a term that described people who were autistic but not learning disabled. However, it is no longer an official diagnosis, and it is falling out of use because it makes an artificial distinction between autistic people. Rather than being ‘high’ or ‘low’ functioning, autistic people tend to have inconsistent patterns of strong abilities in some areas, and challenges in others. This ‘spiky profile’ is a hallmark of autism, but each autistic person has a different cluster of skills and difficulties.
Most importantly - autism is not a matter of what is visible or inconvenient to others. It is a lived experience and a different way of experiencing the world. It may be completely invisible to the outside world but still intensely felt.
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‘I’m autistic.’
I prefer ‘identity-first language’. That means that I say ‘I am autistic’, rather than ‘I am a person with autism.’ That is because I feel that autism is intrinsic to who I am, rather than a disease, dysfunction or add-on.
Guidelines from the UK National Autistic Society and the NHS explain more about this.
It is up to you which kind of language you prefer to use to talk about yourself. Surveys show that the vast majority of autistic adults prefer identity first language, but some people assume it’s impolite. The important thing is to ask other people how they like to be spoken about.
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Neurodivergence and Neurodiversity
‘Neurodivergence’ is a term that refers to autism, ADHD, and other lifelong neurological differences.
Rather than calling some people ‘normal’ and other people ‘different’, ‘dysfunctional’ or ‘weird’, activists created the word ‘neurodivergent’ to mean people whose brains are wired differently, and ‘neurotypical’ or ‘allistic’ for people whose brains are within the norm of the general population.
‘Neurodiversity’ is a term that suggests the human race is improved by having a diversity of different kinds of brains – like biodiversity in nature, having lots of different brains in a society means we have people with different strengths who can work together. This is a model which sees autistic and other neurodivergent people as essential parts of society.
It’s easy to be confused between the two. Generally, ‘neurodivergence’ refers to individuals (e.g. ‘I am neurodivergent’) and ‘neurodiversity’ refers to broader society (e.g. ‘This university respects neurodiversity’ or ‘The human race is neurodiverse.’)
Common features of autism
‘Executive function’ is the name for a group of mental skills which help you to manage your life. They include things like memory, organisation, emotional control, and the ability to plan tasks. Some autistic people have difficulty with executive functioning (also called “executive dysfunction”), and often your executive function will get worse if you are overwhelmed or very stressed.
‘Masking’ & ‘camoflaging’ are terms for when autistic people hide their autistic symptoms in order to be accepted. Sometimes autistic people mask on purpose, and sometimes they don’t even realise they are doing it. This behaviour is more common in girls and women than in boys and men, and some research suggests it is more common in non-white people. These are likely to be due to social norms rather than biological factors.
‘Meltdown’ is a commonly-used term describing times that autistic people become so overwhelmed that they cannot control their behaviour or mask any more. It’s important to note that not everyone likes this word, but there’s no commonly-agreed term to replace it. It might be described as a response to acute or cumulative distress.
From the outside, this might look like shouting, screaming, crying, self-harm, or lashing out at other people. From the inside, it can feel like complete overwhelm, an ‘explosion’ in the brain, or going blank and losing control. It is common for autistic people to have little or no memory of what happened during a meltdown, and this is often a source of shame and anxiety.
This is not the same as a tantrum – it is an uncontrollable reaction to a very stressful situation. However, this can be avoided if we are able to self-regulate, and they tend to get less frequent as we get older. Autistic people can learn to avoid meltdowns by noticing their own distress earlier, and taking action such as going to a quiet and safe place, stimming, distracting themselves (e.g. watching TV) or moving on to a different task.
‘Shutdowns’ are an alternative response, where the person may ‘freeze’, become nonverbal or withdraw from social communication.
You can help a person in meltdown or shutdown by:
- Speaking to them in a gentle voice using as few words as possible.
- Asking them if they need anything. They may not be able to answer.
- Finding a quiet place to calm down, where they can feel safe and have privacy.
- Avoiding touch, loud noise or sudden movements.
- Reducing sensory stimuli: for example, dim the light in the room, turn off anything making noise, remove anything strongly scented. Don’t talk unless it’s necessary.
- Offering them a glass of water and a simple snack might help, but don’t insist.
- Giving them the time they need to recover.
- Being kind, reassuring and non-judgemental.
It’s useful to remember that neurotypical people have meltdown-like responses too when they experience extreme pressure or discomfort. Autistic people are often masking their overwhelm until it’s no longer possible.
‘Mute’ is catch-all word for when someone isn’t talking. Autistic people sometimes go mute when they are overwhelmed, and some autistic people never or rarely speak at all. This can be for physiological reasons. Some people have ‘selective mutism’, which means they can’t talk in scary situations but they can talk with people they feel comfortable around; and some autistic people choose to go mute at certain times as a self-regulation strategy. It’s important to note that being mute isn’t the same as being unable to communicate or understand. Nonspeaking autistics need access to other means of stating their needs.
Special interests: Autistic people often have interests which are very important to them, which they spend a lot of time thinking about and researching. These interests can be anything from TV shows to celebrities to football. Some autistic people (me included) don’t like the term ‘special interests’ and find it stigmatising or patronising – you may see autistic people talking about ‘grand obsessions’, ‘fascinations’ or ‘fixations’ instead. These interests are a source of great comfort and pleasure, and are one of the ways we can self-regulate.
Stimming is short for ‘self stimulatory behaviour’. This is something that autistic people sometimes do to calm themselves down, cheer themselves up, or to regulate strong emotions. It includes repetitive movements or soothing actions. Some stimming behaviours are very visible to other people (like rocking or flapping your hands), but others are very subtle (like biting your nails, humming, stroking a pet, or playing a game on your phone). Stims are unique to each person - mine is applying lip balm!
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If you think that you are autistic, it is your choice whether to seek a formal diagnosis.
A formal autism assessment, made by a psychologist or psychiatrist, could be of benefit if you need access to benefits, therapeutic care or extra support, or if you need to adjustments at school, university or work. For some people, it is reassuring to have the opinion of an expert.
However, diagnosis can be hard to access, with long waiting lists for state care. Private assessments are expensive. It can also be hard to find practitioners who understand autism in adults, and particularly in groups who commonly mask their autism, such as women and ethnic minorities.
Self-identification is valid, and many autistic people undertake in-depth research in the academic literature, and also seek contact with other autistic people to gain a more nuanced understanding. For many, this is all they need in order to make changes that would make life more sustainable.
Whatever route you choose, the most important issue is your understanding of yourself.
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National Autistic Society (UK)
Autistic Self Advocacy Network (US)
Autistic Women & Nonbinary Network
B+ND: assessment fund for Black people who suspect they’re neurodivergent
A note on Autism Speaks:
Autism Speaks is a US organisation which many autistic people, including myself, avoid because they have consistently ingnored and decentred autistic people’s views, and see autism as something to be “cured.”
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So What Exactly is Autism? - Dr Damian Milton’s survey of the research to date
Am I Autistic? - Sonia Boué’s guide, in collaboration with BOM
How to Talk About Autism Respectfully - Mykola Bilokonsky unpacks the language we prefer to use
What It Feels Like To Be An Autistic Person of Color in the Eyes of the Police - Eric Garcia explains the intersectional risks of being melinated and autistic (free registration required)
Real Autism - Sarah Kurchak on perception vs lived autistic experience
‘I Thought I Was Lazy’: The Invisible Struggle For Autistic Women - Reese Piper on the impact of executive dysfunction on autistic adults
Autism from the Inside - my own article on the inaccurate portrayal of autism in the arts and literature
Why Autism is a disability? - Fergus Murray applies the social model of disability to autism
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MEMOIR & NON-FICTION
Letters to my Weird Sisters, Joanne Limburg
Odd Girl Out, Laura James
On the Spectrum, Daniel Bowman
We’re Not Broken: Changing the autism conversation by Eric Garcia
Stim, ed. Lizzie Huxley-Jones
Camouflage, Sarah Bargiela
Neurotribes, Steve Silberman
Diary of a Young Naturalist, Dara McAnulty
Autism, Bullying and Me, Emily Lovegrove (YA)
Explaining Humans, Camilla Pang
Existing Autistic, Megan Rhiannon
Drama Queen, Sara Gibbs
Spectrum Women: Walking to the Beat of Autism, ed. Barb Cook & Michelle Garnett
Nerdy, Shy, and Socially Inappropriate, Cynthia Kim
Sincerely, Your Autistic Child, ed. Emily Paige Ballou, Sharon daVanport, Morénike Giwa Onaiwu
Aspergirls, Rudy Simone
Queerly Autistic, Erin Ekins (YA)
The Awesome Autistic Go-To Guide, Tanya Masterman and Yenn Purkis (YA)
A Day With No Words, Tiffany Hammond (Children’s picture book)
POETRY
The Oscillations, Kate Fox
The Autistic Alice, Joanne Limburg
FICTION
State of Grace, Rachael Lucas (YA)
A Kind of Spark, Elle McNicholl (MG/YA)
Show Us Who You Are, Elle McNicoll (MG/YA)
Exciting Times, Naoise Dolan (Adult, literary fiction/romance)
Geek Girl, Holly Smale (MG/YA)
You may be surprised that I don’t recommend Temple Grandin’s books here. Dr Grandin has done a great deal to raise awareness about autism, but I personally find some of her stances - particularly about the relative value of intellectually disabled autistic people - problematic, and so I choose not to include her work here.
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My Divergent Conversations series on Instagram
Are You Autistic (Channel 4)
Douglas, Hannah Gadsby (Netflix)
I Feel Different (BBC)
Tyla Grant (YouTube)
The Black Spectrum (podcast)
Audacious Autistics (YouTube and podcast)
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My thanks to Nicky Watkinson for her help in compiling these pages. All errors are my own.