Written by Lucy Knight, Researcher at Barbour ABI
When you think of autism what springs to mind? Do you think of Atypical on Netflix? Or how about the maths genius Rain Man? What about The Good Doctor? Or a disruptive child that can’t speak?
Would it surprise you to learn that in the UK approximately 700,000 people are diagnosed with Autism spectrum disorder (ASD) or that out of the 700,000 only 1 in 6 are employed in some capacity?
Would it further surprise you to learn that I myself, a full time researcher at Barbour ABI am autistic and have been since birth, but was only officially diagnosed at 31 (I am 33 this year). I don’t like IT, Maths is not my best subject, I have friends and can communicate quite well.
Everything I do behaviorally, I have learned. Nothing social comes naturally to me and it is extremely exhausting to try and function in a world not designed for me. Most people when they go to work just have to focus on the job, but I literally have to manage sensory overload, social interaction, social communication and managing my mental health on top of the job I do.
It is important to note that, despite popular belief, we are not all on a spectrum. You are either autistic or aren’t. Yes we are all different, but to be diagnosed autistic you have to meet criteria in several areas not just one or two.
There is also currently no autism psychologist in my local area and therefore the support for me in a medical capacity is well, non-existent due to the lack of funding in this area. It has meant all of my understanding of autism has come from Google and social media influencers on Instagram who were (like me) also diagnosed late. It means I must learn how to manage my disability.
I am not on medication; the only medication that would work is very strong and my doctor is not keen on me having it as it could completely change my personality.
Women tend to get diagnosed a lot later in life than men because women are able to hide it better with social masking and often get diagnosed as having social anxiety or depression rather than autism. The other reason for this is a lot of the initial research done by Hans Asperger was focused on boys, as he didn’t believe women suffered with the condition. Asperger’s is now under the same umbrella as autism.
ASD is a complex developmental condition that involves persistent challenges in social interaction, speech and nonverbal communication, and restricted/repetitive behaviors. The effects of ASD and the severity of symptoms are different in each person.
Autism is classed as a disability, and disability is not a word that I find offensive. The thing with autism is that it is not the condition itself that is disabling but the environment you are surrounded by. Noises, lights, smells and people can all increase stress which enhances symptoms.
The only way to describe what growing up autistic was like without knowing I was autistic is by asking you to imagine moving to a foreign country where no one speaks English and you must go to school or work there. You try to fit in but don’t understand their language. You desperately try to learn it by persevering, only to laugh at the wrong moment or misread a sign. That was and to an extent still is my life every day.
What you also must realise is, although I was only diagnosed 18 months ago, I have known for as long as I can remember that I was different. I just did not fit in. No matter how hard I tried, I just couldn’t make or keep friends.
I spent my 20s on anti-depressants, seeing counsellors and telling them I did not fit in only to be told ‘it is good to be different’ or ‘it is up to me to make the changes’. Anti-depressants didn’t work for me and the reason why is because I wasn’t depressed. I now know I was going through autism burnouts due to being constantly overwhelmed with my environment, changes in routine and trying to be something I wasn’t.
It was only when a colleague sent an autism test to me and my other colleague just for fun and I scored high did I realise maybe this was why I did not fit in.
I had to be VERY persistent with doctors who eventually relented and gave me a test and it went from there. It took 15 months from start to finish to be diagnosed.
I have been bullied my whole life and it wasn’t restricted to school. It literally carried on in workplaces. It is just something I am used to, and it has destroyed my confidence. The person you see is the one I want you to see but I really struggle with self-confidence and self-belief because I was always rejected from social circles and forced to change my behavior to try and fit in. What I do is never good enough.
However, in the 21st century it shocks me when I disclose my diagnosis to hear things like:
- You are lucky you don’t have it too bad.
- You must have mild autism.
- You have the easy kind.
- You need to be more empathetic and less black and white.
- You need to be more adaptable.
- If you need those accommodations maybe you should consider a different career path.
- So you come with a warning label now?
- Are you high functioning then?
- You aren’t autistic.
- You don’t look autistic.
It is mainly the above which is why I am now disclosing my disability to you, as the only way to eradicate ignorance is to educate.
Having autism is both brutal and awesome at the same time.
The perks of my autism are:
- I have higher than average intelligence and have never failed an exam. I have 16 qualifications, including a degree and am a fully qualified accountant. The latter I did because I was bored in my job so decided to stretch myself with a night course.
- I am very calm in a crisis.
- I am extremely resilient.
- I have a photographic memory.
- As routines are important to me, I have exemplary attendance records I am rarely off sick.
- I am solution focused – there is no problem I cannot solve
- I can do anything I put my mind to.
- I know how to interview well because I googled ‘best practice interview questions’ and always ask for feedback when unsuccessful. You can learn from every failure. Interviewing is quite easy for me. The only question I hate is ‘tell me a bit about yourself’ – too ambiguous for me, so I always have to ask ‘what part?’ – personally, my work history or both.
- I love learning, especially about things I am interested in.
- I have seriously awesome customer service skills. I love nothing more than the challenge of an angry customer. Whatever they say, I do not take it personally. I can stay very calm. I also understand the importance of good customer service which can truly make or break a business.
- I do not judge people. I treat people how they treat me and others. It means I am not intimidated by titles, fame or power. I have laughs and jokes with people who are millionaires. I am often well-liked by Managing Directors and CEOs, and have always had good relationships with people of this level. I am not intimidated by them – people are people. We all come into the world the same way and we all leave the same way.
- I can maintain eye contact however, when I need to convey an answer to a question that needs thought, I can’t. I will look to the left for the information in my brain. This is because eye contact requires a lot of effort for me and in order to answer a question correctly, I must break that focus.
- I remember the most useless random facts which can come in handy on a pub quiz.
- KPIs and targets are comforting to me, as it provides clear boundaries as to what is expected and allows me to structure my day accordingly.
- I am quite funny and able to make fun of myself. I find this makes people more comfortable in my presence.
- I have very strong morals and will speak up when I see something that is wrong.
- I love hugs but only from people I trust.
The struggles I have are:
- I can’t identify my feelings and I struggle with them. Sometimes to the point where I will leave a room and go for a walk.
- I am unable to deal with confrontation and will often go mute if I am put in a situation I am not comfortable with.
- It takes me longer to process information when given verbally. I am a visual learner and as such prefer to learn from doing and through having manuals rather than being talked at. I learnt well at school when the subject was brought to life, on a field trip for example. I struggle to concentrate when I am being told things and find I learn best when being talked through something or when it is presented, so through screen sharing and similar.
- I do not know people’s intentions, making me an easier target to be manipulated and more vulnerable as a result.
- I am extremely honest. I have an inability to lie. This is also a positive however, if someone comes up to me with a haircut I don’t like and asks me what I think, I will struggle to come up with a suitable response that comes across as genuine. This has lost me friends in the past.
- I struggle to build relationships with women because they have too many layers.
- I can drink a lot of alcohol and keep control of my emotions. This is a pro and a con because it would be nice to just forget myself for a bit, but I am always hyper aware of my surroundings.
- I mirror behavior. I literally treat people how they treat me. My response in my head comes out the way I want, but to others it can be perceived as blunt. This is something I have yet to be able to rectify.
- I do not feel pain the same way another person does. When I feel pain it is normally at a point where something pretty bad has happened. This is bad because it means I can do a lot of damage without knowing about it and I have to keep check on ‘niggles’ when training.
- My feelings present in a physical way. I will often be agitated and have been literally sick with worry. However, I force myself through situations I find uncomfortable.
- I catastrophise. I go through every scenario and if someone says something that upsets me, I will hyper focus on what they have said which causes me to lose sleep and I won’t be able to focus on anything else until I make peace with it.
- I must dumb myself down because I have been told by people in the past that they find my intelligence intimidating.
- I mask and hide my true self. When I am in public it is a performance. Masking is not because I am ashamed of who I am, it is just so I can get by in peace without being mocked or judged. It is extremely exhausting and can cause an identity crisis for me at times.
- I suffer from autism burnouts at least once a month as a culmination of the above. This can lead to me losing interest in my hobbies, stress and irritability.
- I am oversensitive to noises. I can hear several conversations at once and I can’t be in a room with someone reading a newspaper, eating loudly or typing with acrylic nails. The noises lead to sensory overload and I must leave the room because I will not be able to focus and I become very uncomfortable. Noise-cancelling headphones have been a game changer for me.
- I can’t sit in a room with an open door. Doors must be closed so I feel safe.
- I am often misunderstood.
- I struggle with the demands of social media and group chats and therefore do not engage much on either.
- I struggle to function in large groups of people due to the effort it takes me to process social behaviours. Therefore, I will not be myself and will often combat this by trying to split off into a smaller group. Groups of six or less is fine for me.
My needs are complex but can be easily supported by:
- Asking me if I am okay.
- Giving me space.
- Allowing me to leave a room if I ask.
- Making requests, not demands.
- Working with me.
- Not using negative language.
- Being constructive with criticism.
- Focusing on the positives of my work.
- I wear noise-cancelling headphones to cope with sensory overload.
- I need notice about changes to a routine, work or desk move so I can have time to process it. I am adaptable to a point, but do not take advantage of my ability to mask as this leads to burnout.
- Treating me like everyone else.
- Telling me if something I have said has upset you, so I know not to do it again (it is the only way I learn).
- Being patient with me when I am talking.
Overall being autistic is okay – I see the world in a unique way. The only thing that is not okay is I will never move up the ranks in a company. I will never be given those titles and I am fine with that. As long as I am respected for the job I do, that is all I care about. As I struggle to communicate my feelings or respond in an appropriate way, people can take offence. I never intentionally mean to be rude or hurt someone’s feelings, ever. I have a wicked sense of humour and do like to have a good chat. I will always try to help people if I can. I hate seeing people struggle. I am very kind and just try my best to be understood. I put a lot of effort into trying to socialise and be a good person and I model myself on people’s behaviour I admire.
For more information some good links I would recommend are:
Autism in Women
How employers can help people with Autism
The history of Autism
Causes of Autism
ND – Neurodiverse (anyone with a mental disability e,g, Autism, ADHD, Dyslexia)
NT – Neurotypical (Normal folk)
ASD – Autism Spectrum Disorder