‘You Don’t Look Autistic’

‘You don’t look Autistic’ four words I have heard a lot recently and four words that I am tired of hearing. This is my experience as someone with high-functioning Autism. Essentially when people say this to me what they are trying to say is something along the lines of ‘you look normal’. I’m not. The way my brain works is fundamentally not normal, however because I went most of my life being undiagnosed and also I am able to understand the expected social norms of the society we live in, masking my autism became the norm.

It’s such a strange paradox to be able to have a full and conscious understanding of the societal norms you are expected to fit into as a human and also knowing you don’t fit those norms. For example, if you were to sit next to me on a train and started chatting I would politely smile at you and make small talk while in my mind I would be so overwhelmed and feel like screaming.

I really struggle to cope with loud noises and lots of people, whenever I was invited to parties as a teenager I would always avoid it. At first people think you’re shy, then the more you avoid social situations they start to think you’re anti-social. Then when you avoid them even more, they just think you’re weird. Some people thinking they are being kind and understanding would say things like ‘I don’t enjoy going to parties either’. What no-one understood was that I couldn’t go to parties or social events because I couldn’t cope with the sensory overload and would likely end up having a meltdown. Being autistic is walking around being so acutely aware of EVERYTHING around you, sounds, smells, lights that the slightest change to your environment can create a sensory overload that leaves you unable to cope.

Another common response I received was ‘but you’re clever’. Again, can we please get over this misconception that autistic people are stupid. It’s just offensive. I really don’t think this needs any more explanation.

I’ve had to learn to mask my ‘bluntness’ I guess you would call it. If you want an honest opinion, you will get one, people can find this off-putting. I have had to teach myself how to word things so that others won’t consider me as mean, the reality is that I am not intentionally mean or inconsiderate, I just say things as I see them, literally. So I have to put on an act and force myself to constantly think before I speak and try to figure out if what I am about to say will offend someone. It is exhausting, plus by the time my brain has figured that out, the conversation has moved on anyway.

While I have been quite successful in terms of understanding and accepting my Autism diagnosis, I am quickly learning that society isn’t that understanding or accepting. In a world where we are constantly told to be ourselves, it seems that people like me don’t have that luxury as it seems our blank faces and emotionless responses inevitably offends other people. So, society wants me to be myself but within the parameters it has set out as being socially acceptable?

If I tell someone that I am autistic, it usually means that I am struggling to cope with the situation/environment I am in, not because I am looking for some warped idea of a compliment. I really wish one day I will be able to reveal my autism to people and I won’t be met with skeptical looks or condescending responses like ‘you don’t look Autistic’. I mean, what does autism look like?

I hope that society becomes more open and inclusive to people like me, in the right environment I know I can thrive and develop my social skills and overcome some of my anxieties. I just currently feel like there is a lot of token gestures of acceptance but not much understanding.

I just wanted to write this to get it out of my head, if it connects with any of you reading it then that is great.

What I Have Learned Since My Autism Diagnosis

Since being diagnosed as Autistic in December 2020, my life has changed significantly. I’ve slowly been able to start understanding so many things that previously didn’t make sense. I’ve always struggled to maintain friendships/relationships with people, very often I prefer my own company. I struggle socially, I’m not good at doing ‘small-talk’ so I think sometimes I can be quite blunt and to the point which may be off-putting to others. My difficulty to maintain conversations means that some may consider me to be ignorant sometimes whereas in reality it’s just that I don’t always know what to say or how to get my thoughts across succinctly.

After a few months feeling angry and confused, I kept thinking that if only it had been picked up earlier, I could have gotten so much more support in school. I fell into the trap of thinking how different my life would have been if I had been diagnosed at 5 rather than 25. During lockdown(s) I lost myself in the Football Manager world, I have played the game for many years but during this period of my life it became more than a game, it was my way of coping. I couldn’t make sense of my diagnosis yet and then the pandemic happened so I couldn’t make sense of the world anymore. Getting immersed in the FM world helped me forget about everything for a while.

It dawned on me that I would have to ‘unlearn’ a lot of things and essentially retrain my brain with this new information. Being diagnosed allowed me to understand my behaviours a lot more, for example I know WHY I get anxious now so it is immediately less scary. The not knowing why I felt certain ways was the most difficult thing for me, this subsequently made my anxieties worse.

Here are 3 things I have learned since my diagnosis:

I am different, not less than anybody else: Growing up I always felt like I didn’t fit in, I never knew why and this made me develop the belief that I wasn’t ‘as good’ as others. My behaviour patterns didn’t comply to the social norms, as a kid you just want to fit in, be accepted and I never was. Now I understand that my brain just works differently to other people’s, my thoughts/opinions are no less valuable.

It’s about marginal gains: I learned this from the king of performance athletes, Dave Brailsford. I have been applying this concept to my university work and now to my life. The idea is to think ‘what ONE thing can I do differently next time to make my work/experience/performance better?’ In terms of my autism, I don’t have many friends and I would like to develop the ability to maintain better relationships with people. So after some thought, I plan on joining a disability football team this year. I want to meet others like myself and also boost my own confidence at the same time. The overall idea behind this concept is that if you make enough marginal gains then they eventually become a big gain.

I like myself now: yes, it’s that simple. I am Autistic and I’m okay with that.

I am in no way an expert, I am simply writing what my experience has been. I have found writing things down to be a very helpful way of processing things. I wrote this post because I feel like the last few weeks have been very pivotal, like I have turned a corner in my understanding of myself. I am thinking much more clearly and have a vision for the things I would like to accomplish this year. Autism is a part of me but it does not define me.

Getting Diagnosed as an Autistic Adult

Even though this is primarily a Football Manager blog, I decided to write about what it is like being an Autistic adult simply because it is part of who I am. I just want to use this first post as a way of telling my story.

As a kid growing up, I always felt like the odd one out. I never fitted in anywhere, struggled to maintain friendships. Changes to my routine would cause me great stress and I would feel overwhelmed. I wouldn’t be able to complete even the simplest of tasks. At school I was shy and rarely contributed in any classes, I always worked hard though and I remember having this huge fear of failure and I could never work out why. My parents were never pushy or had any unrealistic expectations of me, they were always very supportive.

As an adult it has been much of the same, I struggle socially and get very overwhelmed by excess noise and crowds. I have had crippling depression and anxiety which has let me to self harm. I have tried CBT, counselling, anti-depressants, the lot. After years of wondering, in 2018 I went to visit my GP and asked for a referral to the Autism Clinic for an assessment, when I explained my reasons she gladly wrote the referral.

After 18 months of waiting I finally had my assessment in December 2019/January 2020. At 25 years old I was diagnosed with Autism, officially High Functioning Autism Spectrum Disorder. I had a real mix of emotions, I was angry, wondering why no one had picked up on it before, doctors, therapists, teachers… anyone. Then I was sad, my whole life had changed, this is a label I will have forever and I had to get my head around that.

Finally I was relieved, because suddenly everything made sense. I understood why I had behaved in certain ways previously. I was just starting to move forward and then lockdown happened. The instant change of routine and lack of focus completely overwhelmed me and because everything just stopped there was very little support.

Luckily I had a very good GP, I made the call and reached out. She sorted me out with some over the phone CBT to help me with coping strategies and prescribed me a low dose of antidepressants (which I am still on). With restrictions lifting and going back to some sort of normality (work, uni, etc) I feel much better.

Being Autistic is part of who I am, but it does not define me.

To anyone reading this who thinks they may be Autistic but do not have a diagnosis I would encourage you to ask your GP for the referral. It was a long wait and quite a traumatic process bringing up lots of suppressed feelings and emotions in the assessment, but having that confirmation, a firm yes or no, has helped me immensely. I now have a better understanding of myself and while I may be the odd one out it doesn’t bother me anymore. I am happy with who I am and it’s the first time I can honestly say that.