Autism As A Label

Autism is something that's often considered by neurotypicals as "just a label" and not something you should be putting on yourself. Despite this, the autistic community take a very different stance on it, and that includes those members of the community who are self-diagnosed. As someone with lived experience of being told "it's just a label" prior to diagnosis, and then seeing and fully appreciating the value that said diagnosis brought, I thought this would be an important topic for me to discuss here.

After my first autism assessment concluded that my only issue was a lack of confidence it left me unsupported and without the closure I was seeking as both me and my wife knew there was more to it than the assessors had decided. That's why when I moved back to York I decided to go for a second opinion. The first GP that I saw in York was of an older generation who clearly didn't believe in mental health issues, which was shown by how she dealt with other family members seeking help by pretty much rejecting them and telling them they were over reacting. Anyway, in my particular case she asked why I want to label myself with something like that, she told me I didn't need it and then gave me the details of another mental health service that wrongly sent me to a couple of months' worth of CBT sessions for social anxiety. I soon realised the CBT wasn't working and arranged an appointment with a different doctor who then set the ball rolling for me to get assessed in York (my previous assessment was in Leeds).

Fast forwarding to over 18 months later I finally got my autism diagnosis, but not before I had difficulty at work in requesting reasonable adjustments because my role had changed. I think I explained in a previous post about the issues I had at work so I won't go into it here, but the long and short of it is that I had to fight for months to get any adjustments put in place throwing all sorts of law and regulations at them before I finally got the adjustments I needed, but even then it was on a temporary basis until I got officially diagnosed. My diagnosis came just as the temporary period was about to end and it made sure that it was made permanent. So that's one way in which being "labeled" by a diagnosis would have helped me much sooner when it comes to the world of work.

On a personal level though, the uncertainty of "am I/aren't I?" was unbearable and the acknowledgment that my diagnosis brought gave me so much closure and relief. I felt like I could finally be open about being autistic and discuss it more publicly than just in the online autism community. A fellow autistic online (can't remember who it was, but if I remember I'll edit this to credit them) once said that labels in the sense of food packaging are helpful because they give so much information about the food, nutritional information, allergens and so on, and basically said that an autism diagnosis is the same in that yes it is a label, but it's one that helps others understand that you might not thrive in social situations, or that you might be sensitive to loud noises, or that you might really, really enjoy trains or wrestling or anime or psychology or literally anything else. It's a much quicker, easier and more painless way of communicating your needs and your reasoning. Imagine if someone questions what you're doing when you're flapping your hands. If you answer along the lines that you're self-stimulating to soothe yourself because you're feeling overloaded they're likely to think you're a bit of an oddball, whereas if you answer with "I'm autistic," their reaction will probably be closer to "Oh, I get it now." At least, I like to think so anyway.

Autism diagnosis or a self-diagnosis isn't JUST a label. To many of us it's validation, it's acceptance, it's acknowledgement, it's understanding, it's a weight off our shoulders, it's a word that we can give to society to explain who we are. This is why we should be congratulated when we receive a diagnosis in adulthood instead of commiserated. I like to think that the same congratulations should apply to a family whose child has been diagnosed because it means they've been given a greater understanding of what exactly they may have been struggling with (if struggling at all - each family will be different) and what they need to do to help both their autistic child and themselves as a family. But in reality a lot of parents let their lack of understanding manifest in grief, and/or taking the wrong route in an effort to support their child (such as ABA for example). I guess being late diagnosed may have saved me from something like that in my childhood, but on the other hand there are things that I really would have benefited from had I been diagnosed in childhood.

I was bullied at lot at school and I would hope that having a diagnosis would have helped with that. I think it would have been another target for the bullies to get at me for, but I really, really hope that if I had been diagnosed my school would have done a hell of a lot more about it than what they actually did, which theoretically would have counteracted the bullying.

I've never been good at making or keeping friends and I believe firmly that if I knew I was autistic I would have received much more understanding from my peers as well as possibly known my own limitations and set boundaries for social situations.

Tying into that is my eternal struggle (until I met my wife) with romantic relationships. Each of my 3 previous relationships was shorter than the last, and the first 2 ended primarily because I was a lot more interested in them than they were in me. It's only in the last couple of months that I've discovered this is a very common autistic trait and the person we're dating can become a sort of special interest. Again, I think knowing I'm autistic and being able to explain that to my partners at the time would have theoretically made them a bit more patient and understanding of how I am. Either that, or it could have put them off completely and made them not enter a relationship with me in the first place. If I'm honest I don't know which route would have been better.

And finally, I think it would have benefited me in a professional capacity as well to have known I'm autistic. I've had more jobs than I think most people have, and I left a lot of them on bad terms. I know I've said it a lot here but it all comes down to understanding as I could have explained my needs and my employers could potentially have been more accommodating of them if we knew I was autistic. Don't get me wrong, there were non-autism-related issues that came up with some jobs (like when I was 20 or 21 I would show up to work hung over more often than I should have), but overall it was mostly issues that could have been addressed and dealt with had I been diagnosed autistic earlier on in life.

So there you have it. That's my take on the "label" of autism, and how it can be an extremely helpful thing for an autistic person to have in life. This is just my personal experience though, and I'm sure that there are infinite other benefits that autistic people have/would have experienced from it depending on when they were diagnosed. Please hit the Follow button in the side bar and follow me on social media. I'm on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: A red and white name badge that says "Hi, I am" in a digital font, and then "Autistic" in a font that resembles handwriting. This is on a white background with "Autism" written at the bottom in rainbow colours, and under that is "As a Label" in black.]