Autism and me part 1: In the beginning

With thanks to my advance readers for their support: Anthony Burrows , Mercedes Clark-Smith , Sarah Gorringe and Baljit Singh

?Dedicated to all my neurodivergent people and parents of neurodivergent people who’ve shared their stories with me; with thanks, admiration, respect and love.

?It’s National Diversity Week in the UK and one aspect of diversity with growing awareness of late is neurodiversity. This is something that has had a significant impact on me, my family and many of my colleagues and their families.

?It’s part of the lives and work of many of us and many people we know. And it’s something that many of us know little about unless it comes into our lives. I’m going to make a contribution to changing that, in the hope that it will make life and work better for neurotypical and neurodiverse people alike. This is my story.

?In?August 2021 (after a long process), my 17 year old was diagnosed as autistic.

?Before and since my teenager was diagnosed, I’ve been researching autism to support them. This year as I learned more and reflected on my life, I progressed from thinking of myself as someone who probably has autistic traits to suspecting it was more than that.

?I took tests. I read a lot. Early in April, I had coronavirus and spent most of a week lying on a bed, either listening to The Magnus Archives or when I could think, reading about autism and self-diagnosis or identification.

?And in April of 2022, I came to the conclusion that I’m autistic.

?It’s difficult to express to you my emotions over the last two years or so as I’ve first supported my teen to find out who they are and why and then gone on that same journey. I am 51, I’ve been living with a sense of not quite fitting in here all my life, wondering why I think and feel as I do.

?It’s taken a while to give myself permission to write these words. I don’t want to be insensitive to diagnosed autistic people. I have a lot of imposter syndrome. I have a lot self-doubt. Most of the doubt was due to myths about autism and very ableist and medicalised views of what autism is, who can have it and how it shows up.

?It's also been harder than usual to share my story with you. I am still processing what this means. Almost six months after identifying that I’m autistic, I still feel like I’ve swallowed something that’s too big to digest.

?The most helpful information I found was written by #ActuallyAutistic people and explained what it feels like to be autistic and autistic thought processes, values and identity.

?Sadly, I’ve also discovered how autistic (including Asperger’s Syndrome) people are misunderstood, bullied, mocked, dismissed from work and generally confused and alienated by the world. In America, it’s still legal to give electric shocks to autistic people as “behavioural therapy”. ?Even if we successfully navigate life, there’s a toll on our mental and physical health. There’s a far higher likelihood of burnout, mental illness, self-harm, eating disorders and suicide in the autistic population.

?So here I am, sharing my story and what I’ve learned; I want my teenager and many other kids I know of to grow up in a world that understands them and accommodates them more than it does now. I’d also like to think that you’d come away with a better understanding of your autistic colleagues.

?In later blogs, I’ll share what autism is like for me, because it’s different for everyone. Yes, it really is. There’s a lot of myth busting to be done. the first thing you should understand is that when you’ve met one autistic person, you’ve met one autistic person.

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But Marie you, don’t look autistic!

?Yeah, I know. Read the previous paragraph again would you?

?You've?probably noticed that things shown in the news and media are often not how things are in real life. A simple example: I’ve yet to see a fictional portrayal of someone using an asthma inhaler correctly and believe me, it is not complicated. Autism is complicated.

?Also, even a relatively straightforward condition like asthma can be misunderstood, I have cough variant asthma. I almost never wheeze, which is the most commonly recognised symptom of asthma. I was diagnosed by a doctor who had heard of it – a lot of medical professionals still dismiss coughing as an asthma symptom.

?Autism also comes with a lot of invisible consequences. If you say someone ‘looks’ autistic, you’re probably talking about obvious and stereotypical behaviours such as rocking, hand flapping, monotonous speech, atypical social behaviours, melt downs or shut downs.

?There’s a lot more to autism than that, much of it under the surface, especially for non-verbal autistics who are often deeply misunderstood and thought to have learning difficulties (sometimes autistic people have learning difficulties, but it is not always linked with verbal and physical difficulties).

?It doesn’t help that the diagnostic criteria for autism is based on the presentation in young white boys. Autism is massively under-diagnosed in female presenting people and intersectionality means that people of colour and different cultures are likely to be even more under-diagnosed. Autism does not have a typical ‘look’.?And whilst we’re talking about appearances, let’s talk about masking.

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Masking

?Masking is something we all do to a greater or lesser extent. You might think of it as your public face. And we are taught how to do it from a very young age. Don’t fidget. Straighten your clothes. Don’t talk too loud. Don’t talk back. It’s not polite if you don’t hug / kiss / talk to / share / make eye contact with your family.

?There are so many rules. There are also more rules and expectations for female presenting people – and we all mask. Autistic people mask more. This is because things autistic people do to be comfortable are often seen as not normal or weird. This makes us stand out, we’re often bullied or mocked. And we’re also (mostly) natural rule followers, always looking for what we should be doing.

?We mask so well that we often don’t even realise we’re masking. And we might not even realise that some of our behaviours are because of autism. We also might not notice that our discomfort with the world is partly due to stopping ourselves being who we are.

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The Spectrum

?At this point, you might be thinking: “Well, autism is a spectrum, we’re all a little bit autistic.” People tend to imagine that the spectrum is a line from ‘a bit weird’ through to ‘tragic’. This isn’t the case, there’s a lot more to it than that, so much so that I’ll include that in a separate blog. If you want to read more now, I highly recommend this article: "Autism is a Spectrum" Doesn't Mean What You Think ? NeuroClastic

?For some, autism is disabling. My teenager certainly perceives it as a disability and no amount of accommodation in the environment they regularly encounter would change that. I know people who are parents of autistic children and I know how much they’re struggling to help those kids.

?So, like ‘allistic’ (non-autistic) people, some of us are disabled to a greater or lesser extent and some of us are not. Some of us (me included) are unlikely to get a diagnosis of autism simply because it doesn’t impact on our daily lives to the extent required to gain medical recognition.

The Empathy Myth

?The last thing I’d like to address is the idea that autistic people don’t have empathy. We do. How we feel and show it doesn’t always look like it does in an allistic person. This is partly due to how we think – some things that bother you just won’t bother me and vice versa.

?The ability to think through why someone is feeling the way they are is called cognitive empathy. Autistic and allistic people don't tend to have cognitive empathy for each other.

?Autistic people can sometimes have good or even overwhelming emotional empathy - we read and respond to emotions. For example if my teen sees someone cry, they will cry too, they feel sad, they can't help it. They might not understand why that person is sad, but they feel the sadness as if it were their own.

?Some examples of behaviours you might see if you share a story with an autistic person:

?1.??????We don’t know what to say. Many of us are poor at picking up on social communication cues – especially if we haven’t had a lot of practise. So we get it wrong or don’t say anything.

2.??????If we do say something, our facial expression or tone of voice or other body language undermines our intent, or we’re so direct that we come across as blunt or cold.

3.??????We might share a story of a similar experience we’ve had. This is not making it about us, this is saying ‘I understand and validate your experience’. It is a typically autistic way of communicating, to share information and “same” experiences.

4.??????If you’ve shared a problem or worry, we may?suggest ways of fixing it (or explain why statistically, the chances of the thing you’re worrying about happening are small). This isn’t because we want to look smart, or make you feel bad because you didn’t think of it yourself. It’s because many of us have problem solving brains and our empathy is often expressed as practical help. Problem solving is as instinctive to many of us as small talk is to you.

?Sometimes, we have too much empathy. I severely limit how much news I consume because it’s just too painful for me. I’ve known autistic people unable to deal with talking to others after seeing some terrible story in the news.

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Superpower, tragedy or part of our identity?

?Just as non-autistic people have mental and physical challenges, so do autistic people. Some of those conditions are ‘co-morbid’ which is medical speak for ‘more likely to turn up with’ autism. Autism does come with upsides though and I’ll go into that in in later blogs.

?The upsides are sometimes described as ‘superpowers’, you may have heard of autistic savants who are maths geniuses, or who can draw a cityscape from memory after a helicopter ride.

?As with most things, the media portrays things in a very black and white way – that’s part of our problem. Lots of very ordinary folk are going about their lives as autistic people, many of them feeling like a stranger in a strange land with no way to understand that.

?Whatever autism is, I wouldn’t be without it. To do so would change who I am. It is quite literally how my brain is built - which means it directly shapes how I think and how I perceive myself and my reality. Everything I’ve achieved and admittedly a fair number of my difficulties in life have come about because I’m autistic.

?That is why autism for me is an identity first thing. I have asthma, I’m not an asthmatic, it doesn’t define me. However, I am autistic, it isn’t something I have, it is part of me, it does define me.

?What next?

?I’m going to follow up with a blog covering aspects of the autistic spectrum.?And then I'll have some stuff to share around autistic thinking. I’ll include personal observations and stories from autistic people I know or content creators. Most of what I share will be from #actuallyautistic people rather than non-autistic medical professionals.

?If you chose to research autism, please carefully assess the information you find to understand the purpose of the various organisations. For example, are they trying to help autistic people or erase autism? Do they want a wholly neurotypical or a neurodiverse world? Do they care more about their own difficulties, or those of autistic people?

?I have one last thing to say. To ask in fact. Please be kind. This has been hard for me to write. Saying “I’m autistic” is a very big deal for me.

?If you have questions, please do ask, but ask with positive intent. Let’s have a good conversation.

?The comments are open…