“You don’t look autistic.” The challenges I face that you don’t always see.

When a lot of people meet me, they’re surprised when I tell them that I’m autistic. “But you’re really friendly and chatty,” people will say. Autistic people can be friendly and chatty. No two autistic people are the same or even exhibit the same signs. Some autistic people are outgoing and chatty, whilst others are more introverted. Some autistic people are more socially aware, others not so much.

Also context is important. If somebody is friendly and genuine towards me, I’m far more open, friendly and chatty. If people don’t make me feel comfortable and aren’t genuine or if I’m in a big group, I act differently. I’m far more reserved and awkward.

Autism for many people is a hidden condition. It’s like assuming that somebody who is outwardly happy and smiley can’t be depressed. I’ve also experienced lack of understanding for having depression. People find it hard to understand what they don’t see. Most people don’t spend enough time with you to really see the struggles that you face. Or maybe they see you on a good day.

Below are the struggles that I face being autistic and only those close to me can really see and understand. Not every autistic person will struggle in the same ways that I do. After all it is a spectrum disorder so not everybody will exhibit the same signs and behaviours.

1. Easily feeling overwhelmed.

I don’t deal very well with stressful or unfamiliar situations. I end up feeling overwhelmed and having a meltdown. Even small things make me feel stressed and overwhelmed such as not being able to find my hairbrush or keys.

When I receive too much new information or don’t know how to do something, I get flustered. I also feel very overwhelmed in new situations and struggle to adapt. Social situations where there are lots of people are very exhausting and tough for me to navigate.

2. Meltdowns.

Feeling overwhelmed for me often leads to meltdowns. The smallest things can cause it. My poor family and boyfriend have to put up with me. My boyfriend had to calm me down at the airport recently. We arrived at security too early; nobody warned us that it was too early to go through security and we had to wait around for ages. I got flustered because there was no staff around and I had no idea when check out opened. The other people were waiting patienly but the whole not knowing what was going on was seriously stressing me out.

Gradually they opened security but we had to get our boarding passes changed because went through too early. The staff were very unhelpful and kept pushing us from pillar to post. I started crying and shouting because I felt so overwhelmed and stressed with the situation. My boyfriend had to keep me calm. Luckily a staff member could see how distressed I was and got someone to help us.

On holiday I had a meltdown because my boyfriend and I couldn’t find the right bus stop and we ended up missing the bus. My boyfriend who is literally my angel managed to calm me down.

I hate this part of autism so much. Anything can make me feel stressed and overwhelmed. Even something as small are not being able to find my lipstick in my bag sends me into a meltdown. I wish I could just chill out but I can’t.

3. Finding it difficult to navigate group situations.

I hate group situations especially when I don’t know people. The prospect of small talk and having to keep a conversation going exhausts me. I find it extremely difficult to keep track of different conversations and I easily get distracted. I also prefer more in depth conversations and don’t like moving from topic to topic especially if I still have a lot left to say on a topic.

I also find it hard to click with most people so I’m often left behind and overlooked when I’m in a group. I find it hard to know when to speak. I much prefer small groups or one to one interactions.

If I were an animal I definitely wouldn’t be a social one that lives in groups. I’d be a solitary animal like a cat. Some people love the camaraderie of groups, meeting new people and having an opportunity to socialise. Some people crave social interaction on a regular basis. Social interaction is of course important for autistic people but we need it less. I have a close friend who is autistic. She works from home and only goes into work one a fortnight.

Some people would hate that and crave regular social interaction but she doesn’t. I’m the same. I would love nothing more than to be a full time writer and sit and write alone all day.

4. Heightened senses.

I’m like a cat; I can detect even the smallest sound or faintest scent. These heightened scenes are not necessarily a good thing as they’re very distracting and disturbing especially when I’m trying to sleep. Apparently many autistic people struggle with insomnia.

Small things such as a small blue light from the TV or a quiet humming noise will bother me and stop me from falling asleep. I get easily distracted by noises. Some noises I find intolerable like kids screaming or people talking really loudly. I hate clubs and bars. I hate anywhere with really loud music and lots of people.

Heightened senses are really not pleasant and are extremely distracting.

5. Struggle with social cues and being taken advantage of.

Difficulty understanding people’s intentions is a common autistic trait. Many autistic people are seen as naive and not very streetwise. I’ve always taken people at face value. I’ve gotten a lot better over time at learning that people aren’t always genuine and some have ulterior motives.

For example I’ve been taken advantage of by men. I thought some guys were being genuinely friendly and nice towards me when really they wanted to get into my pants. An example of this was when I was going through a rough time during COVID. Not only did I struggle with the pandemic but my mum was diagnosed with cancer. A guy I met once at a friend’s wedding reached out to me via Facebook. He offered his support and messaged me every day. I thought he was being genuinely nice. In my eyes I didn’t think he had ulterior motives as he was married with a kid. I knew his wife who happens to be autistic too.

It took me a while to realise that it wasn’t normal. He would video call me every day and he started making comments that I was sexy. Luckily I ended contact with him.

Experience has taught me to be more shrewd. I was terrible at reading people. I would think that people liked me when really they were laughing at me and making fun of me.

I’ve been bullied at work because I’m very sensitive, honest and find it hard to stand up for myself. Employers haven’t been understanding of the difficulties I face because of my autism which leads me to my next point.

6. Work difficulties.

Although I know that I’m intelligent and capable, I lack and struggle with many skills that are valued in the workplace. I struggle with executive function including organisation, time keeping and memory. I need a lot of direction which frustrates employers. It find it hard to learn new skills including technical skills. I find it hard to follow instructions and need to be shown things a few times. I need practice and plenty of time before I become confident enough.

My brain struggles to process too many instructions and tasks. I become overwhelmed and my brain shuts down. I have extremely poor short-term memory. This is made worse when I’m given too many tasks and instructions. Add stress into the mixture and I feel like I have Alzheimer’s.

Time keeping is difficult for me. I’m very slow and I’ve always struggled to complete tasks. At school I often wouldn’t finish tasks and would get poor grades because I ran out of time during exams.

The list of difficulties with executive function is long and I’m planning to write an article specifically on difficulties in the workplace that I face because of my autism.

7. Difficulty dealing with change.

Change is an inevitable part of life but as an autistic person I really don’t like it. I like what I know and I know what I like. In my view, if I’m content why should I change? Even if change means more opportunities, it’s scary. I would rather stay at a job where I feel good and am accepted and appreciated even if the pay isn’t great than apply for a job with more money and a more senior role but risk not liking the role and not fitting in.

I’m the kind of person that would stay at the same job for years simply because I’m satisfied there. So many people have suggested that I move abroad to teach English but the prospect of moving to another country is terrifying. I find it hard to make friends and settle into a new environment. I like the comforts of home. Change for neurotypical people isn’t always easy, but for people with autism it can be especially tough especially if you don’t have a support network and guidance.

8. Problems with executive function.

I’ve already spoken about this and how it affects my work. I struggle with organisation, time keeping, short-term memory and learning new skills. I can be extremely slow especially when it comes to completing tasks. I struggle with emotional regulation and can become easily flustered, distressed and angry especially if I can’t do something.

These skills don’t just affect work but every day life. I find it hard to plan and manage time, which means I often get very little done. I find it so hard to focus on tasks I don’t really want to do and often keep on delaying them. I’m very forgetful as well and unless I write things down, it escapes my mind. That’s if I even remember to write them down in the first place.

9. Problems following and understanding social rules.

I understand rules that are logical and make sense, but I don’t like to follow rules that don’t make sense to me and I will attempt to break them. For example in my previous job I wasn’t allowed to finish a bit earlier when there was no tasks left for me to do. I worked in a school- the children would leave by 3pm and I had to stay until 3.30pm. Even when all the children had gone home and there was no admin or assistance needed, I had to stay until 3.30pm.

It made no sense to me. It was explained to me that those were my contracted hours. I was getting paid little as it was and if there was nothing for me to do, I might as well not be there. The staff would sit around chatting and not working.

I’ve gotten into arguments with people because I question or won’t follow rules especially those that are just there for the sake of procedure. I get angry and annoyed and I will argue with people. I’m definitely the worst candidate for organised religion because I question everything.

10. Other comorbidies related to autism.

Autism is linked to other conditions such as Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), anxiety and depression. I suffer with OCD, anxiety, dyspraxia and depression which complicate my life and makes it hard to function. It’s so hard to be carefree and enjoy life when you have to deal with constant and unpredictable obsessive thoughts and low moods. It’s frustrating knowing that you struggle more than the ordinary person and lag behind in life. You lag behind in social skills, relationships, jobs and life experiences.

The bottom line is not to dismiss somebody’s struggles because they appear “normal.” People behave differently in different contexts and situations, as well as with different people. You usually don’t see the whole picture of somebody, especially if you don’t know them well. Autistic females are especially adept at masking.

Autism doesn’t have a “look.” Not all autistic people behave and present symptoms in the same way. Just because the symptoms aren’t obvious doesn’t mean that we don’t struggle. It’s usually people with hidden conditions that need your understanding, support and lack of judgement the most.