Self-diagnosis is valid: Autism Acceptance

This is a very difficult post to write, but it's important. Right now, thousands of people are waiting months and years for assessments, endlessly ruminating on whether they are neurodivergent or not.

As awareness grows, availability of assessments is reducing. The significantly higher suicide risks in neurodivergent people, combined with the lack of support until someone is at crisis point, is terrifying for our society. So I hope that by sharing my experience, it can help you to understand that a formal medical assessment is not the 'only' way you can get help.

Accepting that I'm Autistic is really difficult for me to do (probably because I keep overthinking concepts like Autism 👀). This has become more evident for me in the last few years, as I've learned how to relatively successfully manage my ADHD symptoms that make me prone to moving country every few weeks. (They only give me a month's worth of medication at a time!)

As there's a huge crossover between Autism & ADHD, I've also coached a huge number of people who are diagnosed with both neurodevelopmental conditions, and felt validated in the way their brain works. I didn't realise it wasn't normal to freak out unless you have ALL of the information about a situation, or to make agendas before every conversation you have - including with friends and family. It's been amazing to coach these people on Autism as well as ADHD, simply by completely understanding how their brain works.

As a child, I used to eat paper and obsessively chew my clothes. I remember a whole evening spent crying hysterically over a piece of lamb because I didn't like the texture. I hated showers because I hated drying my hair. I loved rollercoasters and hanging upside down from trees, because I felt like I was actually in my body. I'd study other people in secret, trying to figure out how to be like them and fit in - the magic formula, like washing (and drying) my hair twice a week. This is why I became obsessed with reading: I was trying to find the answers of how to be 'normal'.

As a teenager, I discovered something that made the pain of communicating with other human beings more bearable: alcohol. When my ADHD symptoms started becoming more obvious years later, I'd kick off every social interaction (including a succession of first dates) with a tequila shot. This ended well for no one, but I couldn't stop for years, until I took ADHD medication, which stopped me from getting into these situations in the first place.

Being neurodivergent has made me extraordinarily vulnerable throughout my life, constantly looking for guidance of how I 'should' be. As a child, I experienced terrible abuse from strangers who offered me lifts or said they wanted to 'help' me. I was pushed into modelling from the age of 13 and had no idea how to say no, or that the things that were happening to me shouldn't be happening to anybody, let alone a child.

I just trusted anybody that spoke to me, and still find it very difficult not to, as my ADHD propels me to impulsively move into strangers' houses in a matter of months. Trust is one of these tricky abstract concepts my brain tends to deal with in only 'all or nothing' capacities.

In Christine McGuiness' new documentary 'Unmasking Autism', experts say how 9 in 10 Autistic women they see have experienced severe sexual or domestic abuse in relationships. They said that they all shared the experience of being in situations without realising how they've gotten there.

It feels like having your soul kidnapped. At 18, a random stranger told me to lose 3 inches off my hips or she'd be fired. I said yes. I went and got measured every week, stopped eating, and had everything about me changed to do a job I had zero interest in doing. I couldn't understand how I'd gotten into this situation, and every single similar one since.

String after string of dangerous situations, so terrible to the point that I've now developed an unconscious habit of asking people not to murder me when I feel unsafe. (This is apparently offensive to non-murderers). I also have a painting by my door which says 'PROTECT YOURSELF' as a reminder.

I once spoke to a policeman about harassment, and he asked me the standard list of coercive and control questions they ask in these situations. I said yes to every single question, unable to figure out how I'd not been able to realise behaviour like someone else controlling my medication, clothes, work, or food, wasn't okay before being asked so directly in this context.

This comes from a fundamental anxiety about interacting with other human beings. I HATED break time in school more than anything. I had no idea what to speak to other kids about, and had always been bullied. I just got quite annoyed at the pointlessness of their bullying: what does it matter to anyone else if my skin is 'yellow' or I'm tall or have a lisp? At least have a good reason for disliking someone!

I still cannot stand being in social groups that aren't work related. The anxiety I feel in social settings like 'going to the pub' or 'hanging out' with unstructured time is almost unbearable. I can't stop monitoring different inputs of social interactions and trying to figure out how I should be presenting myself, or when I should talk. This is probably why when my family does hang out, we are most comfortable playing board games (they say it runs in families).

I have left far too many WhatsApp groups from believing people didn't like me, when I'd just excluded myself because of this anxiety. More people than I can keep track of have simply stopped talking to me out of the blue, for reasons I will never understand. I assume I did or said something they didn't like, but I've got no idea what this is.

When this happens so often, it's easy to feel like you are the problem, and to constantly apologise for your existence.

These days, as an adult free of the obligations to sit in an office with other people and make small talk about the weekend, navigating whether to go for lunch or not, obsessing over how I and the work I am doing could be being perceived, I get to stay in my flat most of the time.

Living alone, I am free of the endless stress of being perceived by others, over-analysing myself through their eyes and obsessing over whether I was spending the 'right' amount of time outside of my bedroom. This usually made me aim to be at home as little as possible, because I felt so under this self-imposed pressure at all times. I've moved house pretty much yearly - forever.

The more I've unmasked because of understanding my ADHD, the less I force myself to do things I don't want to do, like go clubbing or meet up with people I don't like just because they ask me to.

However, this has also meant I've struggled with Autism more, because I've been invalidating my own experiences of doing what I want to do. I've felt lonely but also struggled to be around people, something exacerbated by finding ways of communicating that work for me but that also help others. I can get really overwhelmed by the amount of messages I receive from other people and not know what to do with them.

I would prefer to stay in and work on a Friday night rather than go outside in the dark and try to navigate public transport. I have been beating myself up for this and trying to 'force' myself into socialising, where I've repeatedly found myself in dangerous situations, like having my drink spiked. It's made me feel like there's something 'wrong' with me for not leaving the house more, and for experiencing challenges when I do.

The difficulty is that years upon years of masking, combined with the conditioning of modelling, is that I have become so disconnected from my feelings and emotions that I'm not always aware of them. I spoke at an in person event recently, and it was only on the train back that I realised how much the flashing lights, loud sounds, intense chatter and expectations of small talk with strangers had impacted me. My energy was completely wiped out for 2 days. It's only through writing like this that I can understand what's going on in my brain.

Paradoxically, I also overthink the most simple of messages. Someone texting me 'how are you?' is enough to send my head into overdrive, because I can't tell what they want from me. Do they want me to do something for them? Are they going to ask me for a favour? Is it my fault because I forgot to reply to their message? How often SHOULD people communicate if they're friends or family? What makes someone a friend anyway? Am I being unreasonable?

Over time, I've come to realise this is something battling against my ADHD. When my ADHD symptoms are calmer, and I'm able to be still, the Autism kicks in, heightening everything, and leading me into panic mode. What 'should' I be doing right now?!

A few years ago, I once shouted at a family member because they didn't turn the radio down low enough in a car. I'd just arrived back from a year abroad, and my outburst was so aggressive that the person left, extremely upset that I was shouting at them after not seeing them for a year. I couldn't help it: it wasn't even conscious.

A few months ago, builders started construction work outside my house. It resulted in 2 weeks of panic attacks: me scouring the local area, doing coaching calls from quiet corners of shops, crying in parks, hyper-alert to all sounds and feelings around me. I know they're due to start again soon, and the anxiety is brewing. I am hyper-sensitive to noise, and my neighbours playing music is enough to send me into a full meltdown. When my ADHD isn't kicking in by booking tickets across the world or handing my notice in, it's easy to feel trapped - and scared.

I operate best in situations where I know what I need to do. My 'human doing' mode. I can't handle 'free time' - unstructured hang outs, or a weekend, especially with my ADHD brain needing constant mental stimulation. This is why I've written 3 books, because it gives me something to DO all of the time, as well as helping me to make sense of the world. I've realised that my obsessive researching and condensing information obsessively into A to Z patterns is Autism.

I realised when I was in full time employment that I saw holidays differently from other people - I stayed in the office all the way through Christmas. Why would I go away for a week when I don't need to? Why would I expose myself to such a huge change when it would be so hard to adapt back again?

Autism is the supporting structure forcing my ADHD brain into some kind of balance. If I am not excessively early for all appointments, or if I don't reply to all emails immediately, I become intensely anxious, because I know they'll be gone from my brain forever. If I fall out of my routine, my entire life falls apart.

I think the verbal reasoning test companies use in recruitment should be a good first assessment for Autism. HOW CAN ANYONE TELL WHAT THEY ARE 'SUPPOSED' TO BE DOING IN ANY ONE SITUATION? I would break down over these, not being able to understand how others simply knew what to put there. Even as a teenager, I refused to apply to any universities that had these tests, because I knew I simply could do not do them.

Recently, these challenges have become more stressful, combined with some very difficult experiences. A therapist recently told me that I should see a psychiatrist which made me incredibly annoyed.

I do not want to give a stranger I do not trust the power to label and categorise my experiences of being in the world, let alone pay them thousands of pounds for the privilege.

I do not want to be part of the world that's upholding a broken system of inaccessible assessments and labels. If someone strongly resonates with the symptoms of a neurodivergent condition, guess what, THEY KNOW THEIR BRAIN BEST. The psychiatrist doesn't open up your brain and look inside it. No physical tests are done. There's not even one standard assessment between different providers. The outdated diagnostic standards we have are largely based on evidence from boys and men.

This isn't fun. Asking for help and daring to tell someone you think your brain might work differently to 'most' people's is like pulling a tooth out of your own mouth. To hear that unless they're pretty much physically self-harming to be privileged enough to join the years long waiting lists at all in some parts of the UK is disgusting.

Getting a psychiatric assessment is not an enjoyable experience. It's not a personality quiz, it's trusting someone you do not know to believe you, likely after a lifetime of not being believed. It's opening up your entire life, your deepest insecurities, to judgement by a stranger. People seeking support are desperate.

At the end of the day, diagnosis can lead to validation for some people. Some, like ADHD, can lead to medication, but not for Autism. So personally, I don't see the point. I know that I am Autistic, and my time is better spent learning about how to work with this part of me instead of invalidating it unless I have a diagnosis. The overthinking part of my Autism is what's led me to write 3 books analysing the world around me and trying to put it into some sort of order.

Even so, I have ruminated on whether I 'should' talk about and explore Autism when I'm not 'formally diagnosed' and whether this completely invalidates all of my other experiences with ADHD. I've worried about people thinking I'm attention seeking and what the 'point' of sharing this is. I'm worried about getting something wrong and somehow insulting people, because it's still new for me.

People who self-identify with neurodivergent conditions are not doing it for fun. Doing this makes you extremely vulnerable, because it's not clear what the outcome is. If this resonates with you, I'd suggest imagining you have received that diagnosis: what next? How do you start moving forward with this knowledge, and can you do that right now?

I am sharing my experience because I've reached a point where I've decided to accept my Autism, along with my ADHD. I've decided to stop trying to figure out what's 'wrong' with me and to start working with my brain, figuring out what kind of relationships and connections I want to have in my life.

You do not need to have a piece of paper to do this. You don't need to be told you do 'have' something or not. You can just notice every time you beat yourself up, and try to be a little bit kinder to yourself, noticing whose standards you're trying to live up to. And you can buy yourself some really, really excellent noise cancelling headphones.*

Once you accept yourself exactly as you are, everything else becomes a lot clearer.

I still don't know enough about Autism or feel confident enough in my experiences to start sharing about it like I do with ADHD or identify myself with it so much. This is totally fine, because I don't owe anybody anything - and neither do you.

I would recommend speaking to a medical professional if you feel you need medical support, but if you believe you're neurodivergent, you don't need a diagnosis to access different kinds of support e.g through Access to Work, which doesn't require a formal medical diagnosis. ADHD is diagnosed when you have a certain level of 'disorder' in your life - if you don't have the negative impacts, it doesn't mean your brain doesn't work in this unique way.

Your experiences are valid.

*If you have ADHD, you might need a few pairs of these, speaking from experience. 👀