Tag: inclusion

Continuation of the series on Autism and employment. Here I interview Martina about how experience of work.

Me: I didn’t do that well at school. I was diagnosed late, so I didn’t have much support at school. Part of the problem was due to socializing issues, and I wonder how much that impacts other people with autism. I wonder how often problems in the education setting impact an individual with autism obtaining qualifications.

Martina: Absolutely, I think help is something that’s lacking. I was reading about this girl with Down Syndrome, the first to get a university degree in Italy; she had support put in place that was for students with learning difficulties. It sounds brilliant. I went through university, but it’s frustrating because I didn’t do as well as I could because my condition always stops me. I always wanted to keep studying, as long as I could really, but I couldn’t manage; I was just burnt out, it’s a massive shame. There needs to be much more support at school and work as well.

Me: I got help at university, but I got a diagnosis of dyspraxia before I got a diagnosis of autism. They misdiagnosed me as being mildly dyslexic. Apparently, people with autism can have spelling and grammar problems in part because of problems with executive functioning. I saw a psychiatrist, and he said I possibly have mild ADHD, so that might be another explanation for spelling and grammar problems. Due to having a diagnosis, even though it wasn’t for Autism, I got some measured put in place at university.

Martina: I was just left to struggle. I also have ADHD, but I’m a strange case as I’m actually into writing, spelling, and grammar. It’s like my special interest, and I’m a perfectionist at it. I feel like I express myself much better in writing than in speaking. When I speak, I can’t organise my thoughts; I keep losing the thread and kind of go in circles. What’s hard for me, aside from finding the motivation to study and be consistent with it, is the admin, tying it all together and knowing what’s going on, managing my time, really staying on top of things. I was lucky to have friends who were like my support; they were like, “oy Martina, you know we are doing this today, and you know that we had to do homework”, they reminded me of the stuff because I couldn’t manage, the kind of organisation of the things. You think what’s wrong with me, I am intelligent, but I can’t remember things, how do I miss all these things? I’m always kind of behind in life.

Me: With me, because I got diagnosed with something, I got extra time and the extra time helped me to organise myself, to do the assignments. It was advantageous. What happened for you after university?

Martina: I came here (to the UK). I wasn’t sure what to do. I didn’t choose what I wanted, because I wanted to do psychology and then my parents weren’t super supportive anyway, and you know it’s a long study with quite a big expense. I backtracked and went into language and literature, which I did in high school. I was offered a job here, and I took it as a chance to come over here; and some of my friends were over here, and they suggested flexible study (completing my masters part-time while I worked). Then I started working, and it never happened, you know you start working full time, and that’s it. Then I just had different corporate jobs, office jobs. Then we moved to Spain, then I started my own business with the cooking then I had {KARL}, and then we came back, so really my career was kind of chopped. I did lots of different things. I worked during uni. I always worked every summer. I was working all the time as my parents weren’t helping me. I got busy trying to pay the rent, really, not following my dreams. It all got kind of a bit lost.
Now that Karl is older and he’s in school, I thought about going back to uni. I’ve always been into psychology and things like wellbeing and yoga, and I think it goes well together. When you learn philosophy in depth its very similar and complementary to modern psychology as it’s all about controlling your mind. I think that helped me to manage, to some extent, my condition. It’s not a cure; it doesn’t treat, but it helped me manage the anxiety that goes with it, rather than the condition because you know it never goes away. I have lots of knowledge here and there, but it’s not a degree. I want to give scientific credibility to my knowledge. There’s a blonde girl, and she talks about Autism in girls, and someone posted it on a science page on Facebook; she states facts about how women are underdiagnosed and our symptoms are quite different to men. Even people on the page were posting asking about whether this was true, which I thought was interesting as even those who are part of the scientific community don’t know that there’s a difference.

Me: You talked to me before about being late to receive an autism diagnosis. Do you think not having an autism diagnosis affected how difficult work was for you? Your experience of the work environment?

Martina: I think that it affected how I looked to my managers in my job at Corel with software for video, photography, and illustration. I started as a support person and then started work as a marketing assistant. In one way, I enjoyed it as they gave you projects and left you to work on them; it was quite stimulating and creative, but the social aspect that you were expected to connect the salespeople and connect to the marketing people and with the whole team. Most of them were lovely, so it was fine, but I just found it overwhelming. It was overwhelming to be always connecting with people and multitasking, and having colleagues internationally from different offices pressuring you over whether you’ve completed tasks. In this job, I was really pushed, and I think eventually, I just had burnout. I needed to take days off here and there, and obviously, they didn’t get it; they just thought I was making it up that I was ill. I couldn’t wake up in the morning; I couldn’t go, and I couldn’t explain this to myself back then because I didn’t know either I just had this exhaustion; I thought it was my chronic illness maybe as well. There was just too much talking I don’t want to talk too much it was just tiring. I would sit there being blank because my brain needs to reload, basically. Even though I’d done well and I’d done everything they asked me, maybe the way I came across was that I was a bit all over the place and struggling, and it just doesn’t make you look in a good light with the manager as I couldn’t smooth talk my way through the office. It’s very much about the kind of chit chat and the jokes and how you bond with your colleagues. I was a bit weird in that situation, and I think I was definitely misunderstood, and they didn’t appreciate the amount of work I had done because I couldn’t sell it. So, I think it impacted me, and obviously, in turn, it impacted my self-esteem probably because I thought, why couldn’t I be like everyone else. I couldn’t understand it myself. I wanted this job. I am enjoying it, but some how I don’t seem to perform.

Me: You said you were diagnosed later on in life. Were problems at work the thing that led to your diagnosis?

Martina: No, it was problems with organising things with family life, such as organising the home when my child came along (I hope to follow up this and talk about being a mother and Autism-this will be a later blog post). My work was making people redundant, and as I was one of the last people to be employed, I was made redundant. After the redundancy, we moved to Spain, and I started my own business, which was hard at the beginning; I did ok however it was a struggle, but I somehow managed because I liked it. But there were things I couldn’t manage, like the admin part of it, I would leave it until my husband would get pissed off and do my tax return as I’d leave it to the last minute as I can’t face the paperwork.

My parents forced me to work as a waitress when I was in school. It’s the worst thing that you can ask an Autistic person to do, go to tables and talk to groups of people, and then you can’t remember what they ordered. I really hated it, but I didn’t have a good argument for my parents about why I shouldn’t do it as I didn’t understand my issues. I couldn’t stand it; there were periods when I was crying every day after work because it was just too much.

I think that slowly during the years, because I was doing something that was hard for people like us to do that I just ran out of energy. I literally feel that my brain has given up on me.

Me: I get what you say about interaction being draining. I sometimes feel that I have to make more effort than the average person to appear bubbly.

Martina: It’s an effort, its not that I hate socialising; everyone was lovely on my team, but it’s still an effort to be with people. I feel I have to make extra effort to be a little bit expressive and present and reply to things, especially in groups of people. The social aspect of work is something I find challenging.

Me: You said you had trouble organising things, so how did you find things such as deadlines?

Martina: I was kind of ok if I had one project and I could immerse myself in it. However, they wanted me to do admin on the side or send you orders to process. If I get interrupted when I was immersed in a task, I find it hard to go back to it and focus on it. I feel that I did the worse things for me, work-wise. I think that maybe I need to be a solitary writer or researcher who does their own thing.

Me: I find I have to have a balance in terms of the amount of people contact I have. If I have too much, I shutdown, but I also suffer if I have too little. I feel I need more downtime than most people.

Martina: It has to be a controlled flow of people, but people coming and going in an open office, it feels like it’s an environment where I have to use all my strength to function. I wondered why I couldn’t just socialise in the way that other people did in the office. You see others, and it just seems so easy. Why couldn’t I walk up to the person and chat with them? I don’t understand how to make conversation like other people.

Me: I did improvisation, and I did find that helpful to some extent. I think that improvisation gives you the message that it’s about how you make people feel, not what you say. You feel less apprehensive about what you say during interactions.

Martina: I had to teach myself by looking at my friends that you have to ask people questions and let them reply, rather than getting carried away about your interests. It’s good to just leave space for others and ask them about themselves. It is always a conscious effort, and I learnt to be kind of acceptable, which is why it didn’t get picked up. People tell me to be myself, and I can’t be myself in public; I wouldn’t talk to anyone, and I’d be sitting in a corner reading a book.

Me: Do you think there is anything that could have helped you?

Martina: I think I couldn’t articulate my difficulties and advocate for myself. At work, I would get stressed, and I ended up apologising for things and taking the blame for everything, as I didn’t remember things and felt that I didn’t do enough. I felt that what I did went unnoticed as I didn’t draw attention to what I had contributed. I don’t think it’s about adaptation I don’t think office work is my kind of job.

Me: I sometimes think that I should be doing something doesn’t involve too much socialising. Maybe I’d feel less overloaded.

Martina: I get that. I think that in my opinion we just don’t fit in many typical jobs. There comes a point where the employer might not feel its worth it if they have to make too many adaptions or have to minimise what you are doing in terms of the actual role. In the office, in customer service or a restaurant, you can’t sustain yourself as you have to present yourself in a certain way and I think it’s just against our nature, you can force yourself for a bit, especially if you need the money, but long term I don’t think its healthy. I think Autistic men are better off as they don’t care as much and perhaps because they often have more of a specialisation such as IT. They’re also not made to feel as bad about their interaction.

Me: I think women are often viewed as being better socially. By that, I mean we’re supposed to be better socially. I think guys are viewed differently, I think if a man is considered to be standoffish, he’s not seen in such a bad light as a woman who’s seen to be standoffish.

Martina: People have told me so many times that you’re standoffish, rude, you’re aloof.

Me: Some people tend to think that I am snobby rather than rude. Snobby isn’t good, though.

Martina: Sometimes its hard when people view you in these ways you start doubting yourself, it’s hard, so I think this is why we mask because we worry about how we’re coming across. The social interaction aspects stopped me from talking to people and promoting myself.

Me: I suppose it impacts on things like networking. I’ve tried to network, but if you’re in a room full of people you feel self-conscious.

Martina: It’s tough. I’ve been to this business seminar, and they got us to move and speak to new people, it’s quite cool and interesting to find out about what they do. However, it’s an effort and exhausting.

Me: I find it less hard to move around the room and talk to people one to one. I find it challenging to make my way through a room and start a conversation with people. Things such as breaking into a group are scary for me. Sometimes when I break into a group, I’ll start chatting to someone, and then I get nervous, and I’ll become inarticulate, and they’ll go back to speaking to the person next to them.

Martina: It will always be difficult; I think we have to find our niche. You have to push yourself out of your comfort zone, but you have to find the balance where you push yourself but don’t feel ill because of how much you’ve pushed yourself. I liked it when I was working on my own thing in Spain, and I could manage my time do yoga, doing healthy cooking, putting things about my cooking online, and have people like it. Working on the café and people really enjoyed the food and coming back regularly, which gave me confidence and was pleasant doing all the creative things surrounding food, e.g., the cooking, the food photography, and creating the blog. I was passionate about it, so I was doing well, and then Karl came, and that was it. I think finding your own thing is the only way, although it’s not easy as we also need to pay the bills. We have only been talking about our difficulties as we try to fit into the neurotypical world. Everything has to work a certain way; it has to be productive have profit, and I think maybe its time to have more space for the things that we bring as well.

We as autistics tend to focus on our difficulties and what we are lacking when we try to go along with this system.
But maybe we can create a new system that’s more sustainable, both for our specific sensitivities, for people’s mental health in general and the environment too.
I think it’s about time that we shift the focus from economic growth at all costs to a healthier way of life for us and the planet. It’s less about being productive all the time and more about actually living well, having a quality of life, and sustainable, fulfilling relationships and activities. Maybe us autistic people can lead the way in this, as we need lots of our own space and time to recharge our energies. But we have lots of strengths as well. We can be innovative, creative, seeing things outside of the box. We tend to have our own viewpoint. We are not so keen to conform. We can be seen as problematic or stubborn by others, but if we don’t think that things are working, maybe we are supposed to change the rules instead of just going with it.
Look at Greta. She’s the perfect example of what a neurodivergent person can do with the right support. A single girl now started a massive movement for the environment. What she’s doing could be seen as idealistic or radical, but it’s just common sense, wanting to preserve our planet.

Me: I agree with respect to changes in the system. However Autistic people will have a hard time in terms of helping with change unless they’re allowed to be part of that system. Which means Autistic people need to be able to get into and stay in work. Which kind of leads on to my next question. So you had issues within the system in terms of the actual job but did you have any problems with the recruitment process?

Martina: Not really; I tend to do quite well in interviews. I give it my all, but then it’s hard to maintain that level of energy and confidence on an everyday basis.