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Exploring a late-diagnosis of Autism part 1: a blog for Disability History Month

There are a growing number of people who suspect that they might be autistic but it was not recognised when they were children. This is particularly common for individuals who do not present in the way prescribed by medical textbooks, especially women and people of colour. The stereotype of an autistic person is still dominated by the nerdy, awkward white boy who lines up toy trains and can’t socialise, the Sheldon Cooper from Big Bang Theory type. These stereotypes are harmful and prevent numerous people from seeking the help they need, or even from coming to a deeper understanding of their own selves – an understanding which may help them find peace for the first time.

This blog has been written to complement the Disability History Month session by The Girl With The Curly Hair, a well-known advocate for autistic women and girls. The blog signposts to some resources, which might be helpful if you suspect that you may be autistic or want to find out more about this condition.

I am a 40-year-old white woman, and for most of my life I have been given different labels: a weird, awkward, shy child; an overly-hormonal, loner teenager; anxious and depressed as an adult. And yet none of these labels ever properly described me, and treatment for anxiety or depression didn’t seem to help me much. It was only when I started to investigate the so-called* ‘female presentation’ of autism that I realised the lists of traits described me too. This is a very common experience for a lot of women, especially if they have kids and start exploring an autism diagnosis for their children.

*I describe this as ‘so-called’ because it is not uncommon for men to present this way too and also be missed as they aren’t showing typical ‘male autism’ traits. 

I have learned so much from the autistic community and other autistic adults, mainly though social media. It is so validating to read a Twitter post that describes some behaviour that you thought was something only you did, and find that lots of other people have the same experience! However, when I tentatively raised this with my GP, I was told there was no point pursuing it. “You seem to be coping” she said, despite the fact I was there to discuss my anti-depressant dose, medications I had been taking for years. Diagnosis is very hard to come by, partly due to long waiting lists, partly because some medical professionals are reluctant to diagnose anyone who doesn’t meet the stereotypical criteria. Seeking out a specialist in diagnosis and going private is an option - if you can afford it.

For these reasons the community is generally accepting of self-diagnosis. There is a perception at the moment that autism is ‘trendy’ as people are coming forward with self-diagnosis. This arises from a number of misconceptions:

  1. That there is some benefit to deciding you are autistic and that people are out to scam – autistic people will tell you that there is no social benefit, no financial help, no extra accommodations and so on unless you are very lucky! People certainly aren’t self-diagnosing as part of some hustle!
  2. The pandemic and especially lockdown threw many people into their own controlled environments and away from the certainties of daily routines. This change and the way they responded to it forced a lot of people to start questioning, and for a few, autism was the answer! For example, if going to the office every day gave you headaches and made you feel like you were going to explode when you got home, and you assumed it was work stress, but working from home solved the headaches even though it was the same work, why was that? Maybe it’s the change of working time, of work clothes, a sensory environment you can control? Those factors point to autism.
  3. The rise of social media has allowed people to share information widely. Autistic stereotypes are so narrow, meaning a lot of people would ever think they could be autistic, and wouldn’t start looking into it. Accessible social media challenges these stereotypes, allowing people to start exploring autism.

The last point is the other reason self-diagnosis is valid – people don’t see one Tik-Tok and decide that they’re autistic! It’s a very autistic thing to doubt and worry, to read everything you can, to compile an evidence folder listing your traits and sensory triggers, to take lots of online quizzes! Most self-diagnosed people have done their research before hesitantly deciding they fit into the community.

Resources

There are a lot of resources out there that discuss autism; some helpful, others not so much. This is a dynamic field and some information can be outdated or misleading, while other sources might even be ableist and intend harm to people with autistic. Some very highly respected researchers and writers are considered to be anti-autistic and ableist by the community, viewing autism as a disease to be cured. The list I have compiled below include social media accounts, books and blogs all created by autistic people. Bear in mind this is non-exhaustive! Use the hashtags #ActuallyAutistic or #AskingAutistics to connect with the community more widely.

  • Sara Gibbs, @sara_rose_g on Twitter, author of ‘Drama Queen: One Autistic Woman and a Life of Unhelpful Labels’
  • The Autistic Advocate, @KieranRose7 on Twitter, blog here: https://theautisticadvocate.com/
  • You Might Be Autistic, @mightbeautistic on Twitter, an often-light-hearted look at habits, quirks and thoughts that often indicate autism
  • Black Autistics, @BlackAutistics on Twitter, exploring autism from an intersectional perspective
  • Pete Wharmby, @commaficionado on Twitter, author of ‘What I want to talk about: How autistic special interests shape a life’ and the forthcoming ‘Untypical: How the world isn’t built for autistic people and what we should do about it’, website and blog here: https://petewharmby.com/
  • ‘NeuroTribes: The Legacy of Autism and the Future of Neurodiversity’ by Steve Silberman, @stevesilberman on Twitter
  • Autistic not Weird blog by Chris Bonnello, https://autisticnotweird.com/, @AutisticNW on Twitter
  • The Autistic Girls Network has a comprehensive list of books, blogs, YouTube channels, videos, apps and websites which are useful for autism and associated mental health concerns like self-harm and anorexia: https://autisticgirlsnetwork.org/resources/

 

Exploring a late-diagnosis of Autism Part 2: Terminology

In my first blog for Disability History Month, I described my own path to self-diagnosis as autistic later in life, and signposted some of the resources that I have found helpful. My top tip is to engage with autistic adults and the autistic community, especially on social media.

However, before you dive in, remember that the field of autism research is dynamic and changing; professionals have their own jargon, and there is a significant contribution from autistic people themselves and the language used in their communities. Therefore, the terms, labels and language people use to describe themselves and their experiences can be very confusing and changeable. The terms a doctor might use could be considered offensive by the community, for example. There are a lot of nuances, below is a guide to help you understand some of the common phrases you will see in autism discourse.

  • Neurodiversity: you will come across the terms ‘neurodivergent’ and ‘neurotypical’ a lot, often abbreviated to NT/ND. Neurodiversity refers to the range of differences in individual brain function and behavioural traits, regarded as part of normal variation in the human population; essentially everyone’s uniqueness fits within neurodiversity. Neurotypical people have standard brain functioning; while neurodivergent people have brains that function differently to that standard. This does not just include autistic people but also ADHD, OCD, dyspraxia, dyslexia, dyscalculia, Tourette's and some mental illness. There can be various forms of neurodiversity within one person. This blog post has a good exploration: https://www.verywellmind.com/what-is-neurodiversity-5193463
  • On the spectrum: referring to someone with autistic traits as ‘on the spectrum’ has become common. This is rooted in a misunderstanding about the autistic spectrum and what it means. To a lot of people, ‘spectrum’ seems to mean a scale, where 1 is ‘a little bit autistic’ and 10 is ‘a lot autistic’. Using ‘on the spectrum’ seems more euphemistic than outright saying ‘autistic’, and, like the functioning labels described below, might serve to distance the individual from stigma. However, the ‘autism spectrum’ rather refers to an individual autist’s range of traits and how much those traits impact them. For example, one autistic person might struggle on the executive dysfunction scale but not be too bothered by sensory issues; while another will find some sensory stimuli to be unbearable. The concept is well explained here: https://www.kentautistictrust.org/post/let-s-rethink-the-spectrum-a-visual-to-help-explain-how-diverse-the-autism-spectrum-is and in this webcomic: https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/ 
  • Aspergers and ‘functioning’ labels. While the community is very welcoming, they are also sensitive to language and terminology used to describe autistic people. While it is no longer given as a diagnosis, Aspergers is still a common term for ‘high-functioning’ autistic people. Asperger himself was a eugenicist who collaborated with the Nazi government in his experiments, and autistics do not wish to be associated with him. The concepts of a ‘high-functioning’ autistic (that is, one who is better able to mask their traits and fit in) is strongly challenged by the community as based in ableism and misunderstanding. Many people labelled ‘high-functioning’ will still struggle in many aspects of their lives, while the term denigrates and dismisses those considered ‘low-functioning’. Identifying as Aspergers or ‘aspie’ may also be a way for some people to distance themselves from the stigma of autism, which many others in the wider community find problematic and redolent of internal ableism.
  • Person-first or identity-first language. Person-first language has often been preferred by medical professionals as a way to separate a person from their ‘problem’, in this case talking about a ‘person with autism’. While some people do not mind being referred to in this way, the vast majority seem to prefer being called ‘autistic’, as they do not believe their autism can be separated from themselves. Autism is part of an individual’s neurology, and thus cannot be a different part of their core self. It isn’t like saying ‘a person with cancer’ where the cancer is something that can be treated or removed; rather it would be like saying ‘a person with tall’ or ‘a person with gay’. If you aren’t sure which someone prefers, ask them! Beth Wilson explains it brilliantly here: http://doodlebeth.com/identity-first-language/
  • ABA: applied behavioural analysis is often recommended by medical professionals as a ‘treatment’ for autistic children. The autistic community, including people who experienced ABA treatment, consider it to be abusive and actively campaign against it. It is likened to ‘conversion therapy’ for LGBTQ+ people.
  • Masking: the term for hiding your autistic traits so as to better fit in a neurotypical environment. This might include supressing your urge to stim, wearing clothes that make you uncomfortable, entering spaces that might induce sensory overload, and hiding your special interests. For a lot of autistic people masking is a tremendous effort and often leads to burnout (which can look like a depressive episode) or meltdown (either exploding in apparent rage or going into withdrawal and being unable to speak). If an autistic person has to mask for an event or for school/work, they may need a lot of quiet recovery time to ‘recharge’. Read more here: https://unapologeticallyautistic.com/autistic-masking/
  • Special Interests/SpIns: Autistics often deep-dive into topics and become very heavily invested in them: reading and researching everything they can, buying all the merchandise and talking about it at every opportunity! This brings autistic people great joy, pleasure and comfort. For many it can be a route into employment, e.g. someone who loves crafting selling their makes, or someone who loves videogames becoming a Twitch streamer. Or dare I say, someone turning their interest into a PhD topic?! Special interests can look like obsessions to NT people.
  • Stimming/stims: stimming is a term for a repetitive behaviour that an autistic person might do as a way of self-soothing, often in emotionally charged moments. This can be negative emotions e.g. flapping hands and pacing when feeling agitated about something, but could also be during positive emotions, e.g. flapping hands and jumping about when excited! A lot of autistic people experience very strong emotional responses and find that they need a physical outlet for them. Stims can also be audio-visual, for example seeking out a favourite song to listen on repeat, wearing bright colours and patterns, or repeating words and phrases (echolalia).
  • Sensory seeking/sensory avoidant: autistic people tend to have a greater sensory awareness. Our senses are more acute and we have more difficulty ‘tuning out’ sensory input. For example, in a busy restaurant as well as listening to the conversation of the people you’re with, you may also be listening to everyone on the tables around you, the music, and the waiting staff; plus watching everyone else, plus smelling all the different foods, plus finding the chair uncomfortable – it's exhausting trying to focus on your friends and your food. On the flip side, sometimes autistics are desperate to experience a sensation – crossing a shop floor to stroke a fluffy cushion, turning the volume up on a song, enjoying a very hot shower.
  • Double empathy: a term that has been coined to describe communication difficulties between neurodivergent and neurotypical people. It is well explained here: https://www.autism.org.uk/advice-and-guidance/professional-practice/double-empathy
  • Autdar: similar to ‘gaydar’, this term recognises that autistic and ND people are drawn to each other. As I realised, I am autistic and looked around at my circle of close friends, I noticed most of them had a lot of autistic traits too. Now whenever I vibe with someone it will inevitably pop-up that they are autistic or ADHD or suspect they are! Autistic Voices United discusses the phenomenon here: https://twitter.com/autismsupsoc/status/1522710944316637187