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Lisa Claessen

Mother of Two

Teacher

Being highly empathetic is a blessing and a curse.

It's an important part of who I am;

I just wish there was a 'volume' button!

Lisa Claessen

Women share their lived experience of autism

I knew very little about autism prior to my diagnosis three years ago. I always thought it was largely something that occurred in males, particularly boys. I was researching the concept of being an empath. This I discovered was a title given to people like myself who are extremely empathetic and pick up on the emotions and are highly attuned to people’s moods. I had always been like this, even as a child, and it was very confusing and draining. I could never switch this element of my personality off. I happened to chance upon an internet article by Samantha Craft, on the female expression of autism. Diagnosed with Asperger's herself, she created an extensive checklist of traits often found in women diagnosed as autistic. I read this voraciously, and it was like someone was writing about me, and the experiences of my life. I was fascinated, but a little cynical, and in the end I decided to save up for a diagnosis, with the possibility that it might be true. I figured I had nothing to lose, and so much knowledge to gain if it turned out to be true. I saw my GP, who organised me a referral.

And so it was that I was diagnosed as Level 1 under the DSM 5. If it were still relevant now, I’d have been said to have Aspergers, but this has been disbanded as a diagnosis.

For me, being autistic is like living with a mass of contradictions. I can easily address a huge crowd of strangers, yet the thought of intimate conversations at a party sends me scurrying to the kitchen or seeking out the resident pet. I’m a survivor of major trauma yet if someone at work takes my coffee cup, uses it and fails to put it back, it’s enough to temporarily turn my world upside down. I’m an incredibly intense person, a deep thinker, and yet I delight in the simple childish pleasures of reading a kids book or catching a frog! I can fiercely and verbally advocate for the needs of a child in my job, and yet I find this so hard to do for myself and end up emailing my thoughts because I become so verbally inarticulate. I obtained my Bachelor’s degree yet I am hopeless at simple things like paying bills, remembering birthdays and bin days. I’m incredibly intuitive to the needs of others yet half the time I can’t describe my emotions and it often takes me days or weeks to actually respond.

I describe myself as a ‘walking barometer’, and I respond to my surroundings accordingly. Loud unexpected noises are terrifying and painful. I have a very overdeveloped sense of smell and taste, and this can be positive or quite off putting. When I walk into a room, I ‘sense’ the atmosphere subconsciously. I’m terrible at reading a lot of facial expressions, but I often pick up that something is not right with someone. I think part of that is due to a very detail orientated person who naturally picks up subtle variations in others. I could never ever understand flirting and I can’t tell you how many times I have misread the signals over the years. Here I am having a conversation over something interesting, and the last thing I’m thinking about is that they might actually be trying to chat me up. I’ve had to manoeuvre myself out of quite a few misread situations over the years, with much embarrassment on my behalf.

When I’m happy, I’ll gesture a lot with my hands. If I’m uptight or even concentrating hard, I’ll fiddle and fidget constantly. I’ll make ‘pleats’ in my clothing, bounce and wriggle my feet, or tap my fingertips against my thumbs. When I was a child, I would twist my hair around and around until it came out.

I find small talk frustrating at times, and I also hate when conversations focus upon me. I’ve always asked more questions of the other person to avoid having to talk about myself. When I meet new people I employ my ‘filing system’ in my brain. It’s like a collection of cards in my brain carrying details of every person I’ve ever encountered. and I often use one that I might think of as similar, to help guide me with conversations.

I am told at times I am ‘straightforward’, or that I like to get ‘right to the heart of a conversation’. I find some of the ways people ‘dance around each other’, truly puzzling. I don’t understand why people spend so much time conversing behind someone’s back, and then that person remains blissfully unaware that they are the topic of much consternation. That to me is cruel. However, I’d never go out of my way to purposefully upset anyone. The thought of doing that actually upsets me. I will also never understand why people will stop and ask someone how they are and they have absolutely no interest in the response. That seems so insincere.

I can be very literal and I encourage people to be very exact with me. If I’m asking you to do that, I expect you to reciprocate. I won’t be upset if you respond accordingly; I’ll actually be so pleased. This is how I learn.

I’m extremely empathetic, and yet sometimes I have no idea what to say to comfort people. I may respond in a practical way to someone who is distressed because I am very overwhelmed, and this is a way I can show that I’m thinking of them. If I found someone on the side of the road injured, I’d be there in a heartbeat to assist, whilst all the time being extremely cool and calm. It might take me days or weeks before I actually experience any emotional response. Alexthymia leaves me and a certain percentage of autistic people unable to describe their emotions at times. It can be very confusing. I’ve always been a ‘chameleon’ and when I look back I realise that for so much of my life I have taken on the persona of those around me. This happened a lot when I was younger. I was always on the edge of any social groups, watching and observing, picking up on how people relate to each other. I actually had a very poor idea of who I actually was, for a big part of my life. It’s harrowing to think you don’t fit in as a younger person, and your social skills are clumsy.

In my years of work, I learnt to hide my anxiety and feelings of having shortcomings, by masking. On the outside I might look like I’m competent, but inside I can be a writhing mess. It wasn’t until I’d get home that I’d feel I could just be me, and the process is actually exhausting.

I identify as a woman, but a woman that has a strong masculine side as well. I remember watching the movie Orlando with Tilda Swanton and being captivated by her character. I have no preference for male or female partners; I’m actually more a person that falls in love with beautiful minds, and the attraction may then follow. It just happens that my partner is a big bushman with the heart of a lamb! He has a permanent brain injury from an accident as a young man and has a lot of sensory issues. Together we know how to soothe each other.

Having a diagnosis was like being given a coat hanger on which I can now learn to frame my life and experiences. At first I found myself repeating the word autistic to myself, as a reflection of my new found identity. I reintroduced myself at work as autistic and received largely positive and sometimes intrigued reactions. I guess I had always masked my way through life, so it was probably cognitively confusing to those that had known me a long time. It’s been a cathartic experience and yet very confusing, because it was like throwing out everything I knew and rebuilding a person closer to the essential me. Who was i? I’d spent 50 odd years building an identity of sorts, but in reality I felt terribly lost.

I built the last 50 odd years on a lot of ‘truisms’ I’d gleaned from extensive reading and observing the neurotypical world around me. I found people eternally hard to understand, and so I read biographies and self -help books extensively, adopting what seemed like sensible rules about life that I could incorporate into mine. And yet I still felt like I hadn’t successfully mastered this successful life ‘thing’ at all.

I feel so privileged to find a counsellor in my local area who understands and has extensive experience with autistic women. Together with her guidance I am building a new paradigm of what is to be Lisa and be autistic. It’s challenging and yet so affirming. I’m learning gradually to be appreciative of my strengths and the fact that I am still alive at 54, when there were so many reasons not to be. I’m grateful for every day I get, and the chance to rediscover who I am. I’ve learnt to become kinder to myself. I’m less likely to compare myself to non - autistic people anymore; I’ll always ‘come up short’ if I do that. My brain just happens to work in a different fashion. Not less, just different. I also practise greater self -care these days, as I am becoming aware that I get tired easily. I have some lovely people I work with who regularly meet for coffee. I love to go occasionally, but I’ve explained to them that despite enjoying their company, I do need more time alone. It’s not personal, and I’d rather be honest. I’m less likely to push myself to complete certain activities like I used to, in order to keep up with others.

I live in the country, as I wished to do even as a child, and it’s there that I am my happiest. My two girls and my partner are the greatest people I could ever spend time with, and my two big dogs are something that keep me alive as well. I need little more. I spend a lot of time working with my hands, and continuing my lifelong passion with making things, whether it be making bread, spinning, or cooking something interesting. I had a hospitality business in my earlier days and to overcome my discomfort with people, I simply hired staff that were good at this. I’m an unfinished story and a survivor. I am proud to still be here and learning that I can redefine myself, not as a ‘failed’ neurotypical person, but a successful autistic one. I’m liking that more and more each day.