Autism

 

I know what you’re thinking. “How come it’s taken you so long to actually write about Autism when it’s there literally in the title of the blog?” Well, there have just been a lot of different topics I wanted to cover first. But also, I wanted to make it more accessible and interesting to EVERYONE, not just purely those who are Autistic or know someone who is.

 

I was diagnosed as Autistic sometime late-2019, at the age of 37. That’s 37 gruelling, anxiety-filled, overwhelming years of not having a clue of what was wrong with me. Frankly, I don’t know how I’ve kept going all this time, especially as things have got progressively worse in my life as time has gone on.

 

Let me make one thing clear, I don’t believe my Autism getting worse is simply because of me getting older, it’s more to do with the trauma I’ve been put through by various people or situations leading-up to the diagnosis. Had none of that happened and I had been diagnosed a lot earlier in life, I could’ve got better support and understanding from people as I’ve grown-up. I may have even been able to avoid a lot of mistakes and misunderstandings from the many people I’ve totally-unintentionally managed to annoy or upset over the years.

 

The irony though is that if I hadn’t hit absolute rock-bottom and become severely depressed, I wouldn’t have been passed to mental health services and wouldn’t have had my diagnosis fast-tracked. I know most people, disgracefully, must wait about 1-2 years before they can even be SEEN by specialists, let alone actually get a diagnosis! So, I guess in that way I’m lucky.

 

I’ve always been socially awkward, struggled to make friends and properly interact with others. I have often realised how my life or development has sort of happened in reverse. As a child, I was a lot more mature and an absolute stickler for rules, hence why other kids would bully me and consider me either a “class swot” or “teacher’s pet”. Whereas, nowadays, I’m a lot more of someone who fights for what he believes in and challenges those in authority if I believe something’s not right (think of teen Climate Activist Greta Thunberg, another fellow Autistic person!).

 

I’ve always had what I call an “encyclopaedic knowledge” of certain things, especially my favourite sci-fi franchise “Star Trek”. I’d often get bullied for that and asked, “How many windows has the U.S.S. Enterprise got?” Believe me, I didn’t choose to absorb this sort of knowledge, it’s just gone that way! In contrast, I’ve always absolutely struggled with Mathematics, no matter how many times I’ve tried. I completely flunked it in school, getting the lowest possible grade in my G.C.S.E.

 

So, if you’re not Autistic, you’re probably wondering exactly what it is I must deal with. Well, I’m what they call “High-Functioning Autistic”, meaning I have a milder form of it which (on the surface) makes me seem like any ordinary neurotypical person. However, I’m always going through a ton of different stuff under the surface. For one thing, my senses are dialled right up. I can’t tolerate loud and/or sudden noise, such as someone talking loudly, loud music or something suddenly being dropped. This does also sometimes extend to quieter sounds, like someone tapping on a table, lips moving or even other people talking/whispering. I have some noise-cancelling headphones, which have been an absolute lifesaver and which I wear a lot (especially when out). 

 

Another sensory problem I have is stuff I see, especially movements. For example, my Dad has some sort of medical condition which means his hands and fingers are always moving involuntarily. I can’t tolerate this, and it creeps me out immensely as it’s like a Tarantula spider’s legs wiggling about. So, I normally must look away or, when sitting near him, must wear a hoodie to block me from seeing it. Believe me, I feel REALLY bad about having to do this, as I know he can’t help it! I also struggle to make eye contact with people, instead preferring to talk to them while looking away. I have had some people deliberately then try moving back into my field of vision, which is annoying.

 

I don’t feel I have the same sensitivity to bright/flashing lights that some on the Autistic Spectrum have. But I do have heightened sensitivity with touch and smell. I don’t like being touched normally or being too close to people physically. I also don’t like certain materials/fabrics, such as coarse wool, which makes my skin crawl and again like I’ve just touched a spider or something similar. I don’t like certain smells, like minty toothpaste or chewing gum.

 

I have a sort of “mental deafness” in that I can clearly hear stuff but sometimes struggle to process it properly. For example, I need to have the subtitles/captions on when watching the TV. Or, if someone tells me something, I need them to repeat it sometimes (although as soon as they repeat it, I instantly know what they said the first time!). Similarly, if I’m talking but then get interrupted, I completely lose my “train of thought” and struggle to recall what I was talking about. I can’t deal with multiple conversations going on at once and struggle to either focus on one of them or even say whatever I need to say myself.

 

I have a heightened sense of empathy with everyone around me. The funny thing is that a lot of neurotypical people have often said that us Autistic people have no sense of empathy. Believe me, empathy is probably the one thing I have in abundance, and which is at the absolute core of who I am as a person. I really care strongly about some people, especially kids and teens. If they feel sad/upset, I feel sad/upset. If they’re being told off by teachers/parents, I feel like I’m being told-off right along with them. This is probably why things went badly in the schools I used to work at, although it was also why I was so good at being a mentor/counsellor for them.

 

As for the “socially-awkward” side of things, I rarely have the confidence to go up to someone and talk to them about something. At the very least, I need several minutes to mentally-prepare exactly what I need to say, like if I’m in a coffee bar and need to order a drink. I absolutely hate having to use a phone and, again, need lots of time to prepare. I recently had a complete meltdown when I was called unexpectedly by people connected to the Job Centre.

 

Which brings me to the extreme side of things, meltdowns. If I get overwhelmed by stuff, whether it’s sounds, people getting angry with me, people not understanding me or stuff not going according to plan, I completely freak-out. This can result in me running away and needing to find refuge somewhere quiet, me throwing stuff, shouting/swearing, crying, struggling to breathe etc. I’ve worked-out different strategies, like putting my headphones on and listening to music or just being left alone for a few minutes. It doesn’t go away quickly though and can leave me feeling severely depressed and quiet for hours or even the rest of the day. I’ve sometimes completely shut-down and walked in a trance-like state for miles.

 

This is where a lot of misunderstanding impacts Autistic children. As a lot of these responses are seen by people, like school staff or parents, as “bad behaviour” or “being naughty”, they’re treated as such and are punished, singled-out, restrained or shouted-at. All of this just ends-up making things even worse and causes even more distress to the child. Sadly, I’ve seen for myself how, despite training or being told differently, some people just stubbornly refuse to treat these kids differently and think they’re “just being allowed to get away with it.”

 

Something that is Important is how it’s not that we should somehow adapt to fit into society but rather the opposite, it should be society that adapts to make US feel more comfortable. There is a definite improvement in understanding Autism and trying to make things better for us, but there is still so much more to be done. The biggest example is the Sunflower Lanyard, which is worn by those of us with “Hidden Disabilities”. More public places and organisations, such as shops and supermarkets, have trained their staff to recognise what it means and how to help us if we need it. I have also added a few “I Am Autistic” cards into a plastic wallet at the end of the lanyard, which not just show I’m Autistic but have emergency info for if I have a major meltdown.

 

However, despite this supposed training, I have not noticed any change. I can walk around a supermarket and staff are still either talking loudly or banging stuff about or making tannoy announcements at a high volume. They may sometimes have “Autism-friendly hours”, but these are usually early-morning when they open and so don’t make a difference when people like me go there later in the day. Also, with the COVID-19 pandemic, the whole Sunflower Lanyard scheme has been hijacked by those wishing to avoid having to wear a mask. So, those of us who genuinely need help get overlooked.

 

It is obvious there is still a lot of hard work which needs to be done in the world to help those of us in the Autistic community and let us lead normal lives. But the best way this can be done is by consulting with the Autistic community itself. It’s no good having neurotypical people, who may have done numerous courses and observed/assessed Autistic people. At the end of the day, none of them know what it FEELS like in our heads or our hearts every single moment of our lives.