Understanding Autism: Labels, Identity, and Neurological Differences

1. Being Autistic Labels are important Labels give us an identity Autism is a neurological difference Sensory information Speech and Language Information gathering and deep interests Executive functioning and motor skills Other things in common Functioning labels are not useful We are writing our own narrative We don’t want to be cured We don’t want ABA We don’t always trust charities We can speak for ourselves Identity first language Where to learn more Learn from autistic people

2. Labels are important • Autism diagnosis is based on non-autistic doctors observing autistic people and asking questions. • There is no blood test or scan. • And so the procedure is biased (gender, race, disability, class, culture, etc.) • Autism was thought of as something that only affected boys and men until very recently. • This means there are many autistic minorities and white women who are now being diagnosed as adults. Read more: Thousands of autistic girls and women 'going undiagnosed' due to gender bias by Hannah Devlin

3. Labels are important • There are still many autistic people who don’t know they’re autistic. • It’s damaging for people to know they are different from everyone else, but not know how to explain this to others, and to always think that they must hide this difference. • This leads to shame, to isolation, to anxiety, and to PTSD. • Labels allow us to connect with others like ourselves. • Labels give us an identity. • “Our personhood was challenged on the sole basis that we “knew” we were different but couldn’t prove it to the world” • - Samantha Craft Read more: Autistic Masking, Late Diagnosis, and Dissociation: The Toll It Takes on Autistic Mental Healthby Autistic Science Lady Everyday Aspergers: A Journey on the Autism Spectrum by Samantha Craft Social Camouflaging in Adults with Autism Spectrum Conditionsby Laura Hull et al

4. NO

5. YES

6. Autism is a neurological difference • We now know that autism is not a mental illness, it is not a disease, it does not need to be cured, and it does not necessarily require medical intervention at all. • And there are lots of autistic people that don’t fit the original “diagnosis” criteria. • So what really makes autistic people different from non-autistic people? • Autistic people and non-autistic people are neurologically different. • This means our brains are different - and we actually experience the world in a different way. • The most obvious difference is in how we process information. Read more: Autism in the workplace by Janine Booth The power of autism by Laurent Mottron

7. Autism is a neurological difference • Sensory information • Autistic people have a larger perceptual capacity. • Your perceptual capacity is composed of everything you can sense. • It is finite, and it has to be filled. If you turn the music down so you can concentrate, for example, this is reducing one form of sensory input so you have more room for another. • For an autistic person, this capacity is larger, and so we notice more sensory data in the everyday world than non-autistic people. • And this can be good or bad depending on the circumstance. Read more: Autistic people can hear more than most – which can be a strength and a challengeby Anna Remington The Israeli Army Unit That Recruits Teens With Autismby ShiraRubin

8. Autism is a neurological difference • Speech and Language • Many of us imagine things literally as well as figuratively, and this can be also be good or bad depending on circumstance. • It means some of us enjoy writing with poetic imagery, puns, metaphors, and anthropomorphism. • While many of us love written language, lots of us can have difficulties with speech. • Many of us develop spoken language later than non-autistic people or do not develop it at all. • Many autistic people prefer things in writing if the information is really important. Read more: Study Finds Link Between Autism, Creativityby Michelle Diament Non-Significance of Early Speech Delay in Children with Autism and Normal Intelligence and Implications for DSM-IV Asperger’s Disorderby Susan Dickerson Mayes and Susan L. Calhoun

9. Autism is a neurological difference • Information gathering and deep interests • Autistic people tend to be really passionate about the subjects we enjoy. • When we find something interesting, we will want to know everything about it. • This can include collecting things and making lists. • This can be framed negatively but there are plenty of times when the ability to gather data, and to be passionate and determined can be beneficial. Read more: Study finds autistics better at problem-solvingby University of Montreal and Harvard University People with autism have a greater ability to process information, study suggestsby the Wellcome Trust

10. Autism is a neurological difference • Executive functioning • Some of us can have problems with planning and completing day-to-day tasks, particularly when we’re stressed. • Motor skills • Many of us also have dyspraxia, and people with dyspraxia can be bad at balancing, and at catching and throwing, particularly small objects. • Some of us also naturally move our bodies differently to non-autistic people. • Stims • Stimming means doing anything repetitively that we find enjoyable or relaxing. • This can be repetitive movement, or it can be verbal or visual. Read more: Motor Difficulties in Severe Autism by IdoKedar Ask an Autisticby AmythestSchaber

11. Autism is a neurological difference • Other things in common • Co-occurring neurological differences • Autistic people are more likely to have neurological differences like synaesthesia, prosopagnosia (face blindness), dyspraxia, dyslexia, Tourette’s, ADHA, and OCD. • Sexuality and Gender • Autistic people are more likely to identify as LGBT+ than non-autistic people. • Mental health • Like other marginalised people, autistic people are also more likely to suffer from mental health problems including social anxiety and PTSD. • While this is a common experience for autistic people, it is not a necessary part of being autistic at all. Read more: Sexual Orientation, Gender Identity and Asperger/Autismby Jamie Freed Sexual Orientation in Autism Spectrum Disorderby George R and Stokes MA

12. Autism is a neurological difference

13. Autism is a neurological difference Functioning labels are not useful • Autistic people used to be referred to as “high functioning” or “low functioning”. • But in reality, autistic people are not split up this way. And our skills and abilities can vary over time. • And so, these labels are no longer considered useful. • And Asperger's is no longer diagnosed in the UK and USA. Understanding the Spectrum by Rebecca Burgess, Theoraah/Tumblr.com Read more: Why the "high/low-functioning" labels are harmful to autistic people by Andy Burns

14. We are writing our own narrative • When autism it is only discussed by medical professionals and charities, then the story of autistic people is told by people that see autism as a defect. • This has led to a lot of misinformation that has been dangerous to autistic people – from misdiagnosis, to abuse. • The best way to counteract this misinformation is to let autistic people tell their own stories. • Once the narrative is given to the people with lived experience, so much more has been learnt and the narrative, and vernacular has changed. Read more: 70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read by the silent wave

15. We are writing our own narrative • We don’t want to be cured • Autistic people perceive the world differently to non-autistic people because we have a different neurology – a different type of brain. • This means: • Autism is not something that can be cured (and most wouldn’t want to be). • Many therapies that claim to reduce the external “symptoms” of autism are dangerous and abusive. • One example of this is Applied Behaviour Analysis (ABA), which is similar to conversion theory for LGBT+ people and is currently practiced in the UK. Read more: Jenny McCarthy's Autism Charity Has Helped Its Board Members Make Money Off Dangerous, Discredited Ideas by Anna Merlan 2018 Survey by AutisticNotWeird.com

16. We are writing our own narrative • We don’t want ABA • When many people hear the word autism, they think of videos of children screaming and hurting themselves. • The behaviour is the same for people in extreme distress, whether they are autistic or not, and the way to prevent it is to remove the source of distress. • Instead, programs like ABA train autistic people to endure situations that make them uncomfortable without resistance, at a serve cost to their mental health. • If anyone is forced into a mentally distressing environment for long periods of time, then this leads to PTSD. • Teaching children that they must pretend to be mentally and physically comfortable to please others, is grooming them for abuse. Read more: Does ABA harm Autistic People? by Shona Davison

17. We are writing our own narrative • We don’t always trust doctors and charities • Many charities associated with autism promote cures and therapies like ABA. • One reason for this is that they are run by non-autistic people who are taking advice from other non-autistic people. • Autism Speaks, the world’s largest autism charity, is also known for supporting the idea that there’s a link between autism and vaccinations. • Their symbol is a blue puzzle piece. • The jigsaw puzzle symbol was first developed by the UK’s National Autistic Society to represent the "puzzling nature of autism” and our “inability to fit in”. • The colour blue is used to represent the fact that “autism is more common in boys”. Read more: The Future (and the Past) of Autism Advocacyby Ari Ne'eman Do puzzle pieces and autism puzzle piece logos evoke negative associations? by Morton Ann Gernsbacher et al.

18. NO

19. YES

20. We are writing our own narrative • We can speak for ourselves • Autistic people tend to prefer autistic run organisations like ASAN. • Many autistic people support neurodiversity. • Neurodiversityis the idea that neurological differences - like autism, ADHD, dyslexia, and dyspraxia – do not need to be cured, but recognised and respected as any other human variation. • Autism can still be a disability – some autistic people consider themselves disabled and some don’t. • People that accept neurodiversity tend to accept the social model of disability. Read more: Neurodiversityby Nick Walker Neurodiversity, language, and the social model by autisticality.com

21. We are writing our own narrative • Identity first language • Some autistic people prefer the term “person with Asperger’s/autism”, and this should be respected. • However, the majority of autistic people prefer the term “autistic person”. • “Autistic person” is in line with terms like “gay person”, “black person”, “happy person”, “normal person”, “nice person”. • “Person with autism” is more in line with terms like “person with cancer” • Autistic people have mixed opinions on the terms “autism spectrum condition” and “on the spectrum”. Read more: Identity-First Language by Lydia Brown

22. Where to learn more If you want to learn more about being autistic, learn from autistic people! Use #AskingAutistics and follow #ActuallyAutistic people on twitter: @QLMentoring,@GretaThunberg, @BeingKaylaSmith, @soundcube, @NeuroRebel, @AspieHuman, @brookewinters33, @aspergersgirls, @ZebraW2015, @__INSA__, @autselfadvocacy, @abaukdiscussion, @GretchenScience, @AutisticPriest, @AgonyAutie, @neurowonderful,@AnnMemmott, @aheeleyRIBA, @doodlebeth, @RussellRElliott, @slooterman, @autismage, @NotLasers 70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read by the silent wave If you look to charities for help, use charities run by autistic people. If you look to medical organisations, use those that do not see autism as a defect.