I trashed my GCSEs. I had spent my teenage years having problems sleeping, which led to periods of psychosis. My sleep deprivation was caused by anxiety, which was partly a product of difficulty fitting in at school. None of the teachers picked up on the problems I was having, even in the last year when I skipped classes.
Fast forward a few years, and I had managed to sort out my sleep, redo my GCSEs, and do the equivalent of two A-Levels in the form of an Advanced GNVQ in science. While at university, I got provisions put in place, such as a laptop with software that helped me plan out my essays.
After my degree, I went on to do a masters, I got through my master’s. I did well on my project I’d wanted to do a Ph.D. in neuroscience, but I hadn’t managed to try to create a rapport with the lecturers, partly through lack of eye contact and partly through not appreciating how one makes an impression, for example by dressing smartly. I was most of the way through my master’s project when it dawned on me that most of my fellow students were dressed in smart casual. There I was walking around in t-shirts (sometimes statement t-shirts) and jeans. This inability to conform to what was considered the social norm didn’t go unnoticed by some lecturers at the Institute Of Psychiatry; I could tell that a number of them were far from impressed. Not only did it not impress the lecturers, but they were late giving projects to some people; I was one of those people for whom they took time to provide a project. I think the fact that I was seen as being different and not knowing how to relate in the same way as the other students did affect how long it took to gain a project. After my masters, I attempted to get onto a Ph.D. However, the Ph.D. interview was a disaster; the panel had their head in their hands, apart from the guy asking the questions. I know how to dress for an interview. With an interview, there are easily identifiable social norms in terms of dress. The problem with interviews was then and has always been that I am not great at expanding on a point; I am not sure what the interviewer needs to know. Sometimes I answer yes or no to open questions.
I worked temporarily in various places and volunteered as it was easier to get work this way as the interviews were less formal. In one of the places I volunteered, I was given a series of instructions and was asked to go away and get on with the task. I had informed them that I had a developmental condition and that one of the things that I had needed was to have instructions given in a certain format. I required that the tasks were broken down and preferably for the instruction to be written down. The reason that I need a task written down is that I have issues with working memory. Working memory is the ability to hold instructions in mind[1]. My supervisor barked tasks at me; I started on them and did some of them. Afterward, I would begin to researching something related on the computer as I thought I had finished. My supervisor would come in and ask me how I was getting on I’d tell him what I’d done. After I showed him my work and he realised I hadn’t done all the tasks that I was supposed to do, he’d get frustrated. At the time, I didn’t complain about the lack of adjustments as I wanted my stint to lead to work. At the end of the year, I was told I couldn’t work there because I’d not done well enough. From then on, I always tried to push for adjustments if challenged about my performance. However, as a rule, I didn’t see any of the adjustments put in place. There was a lack of recognition of my struggles in terms of information processing and social interaction. At one point, I was doing a stint in NHS clinics supporting podiatrists, I had a sit-down review and was told that I got on well with the team, and there were no problems there. However I had a few issues that were problematic, I had a feeling they were Autism related, however when I told her I had Autism she turned to me and told me that I didn’t look Autistic. A few minutes through the review She said, ‘You have problems with forming a rapport when you talk to patients.’ It was then that I realised she clearly didn’t understand what being autistic meant.
As well as adjustments being ignored as ‘I don’t look autistic enough’, I also feel a bit like a square peg in a round hole. I’ve done jobs because I took something to make the transition into adulthood and independence, something that is everyone’s aim. However, I have felt that a lot of the jobs I’ve done haven’t allowed me to show what I have to offer. A lot of the work I’ve carried out has showcased my weaknesses, as I took what I felt was open to me without going through the formal interview process. However, I am torn as to whether it’s best to put in place adjustments that help the autistic person fit the job or find a job that fits the autistic person.
I decided not to go into the NHS permanently as I felt that I wouldn’t be supported in my role. I left to volunteer around Europe to improve my language skills and rethink my career direction. Before trying out work in NHS podiatry clinics, I’d considered filming. My idea had been to potentially train as a foot health practitioner or a podiatrist (a job where I could help others) and use this to support my film work. When I returned from my volunteering around Europe, I talked to a friend and found out he ran a film meetup; I joined and decided to temp/freelance while learning how to film. I joined temping agencies and freelanced as an EFL writer and EFL teacher. Around 2018 I lost work due to changes in contracts and the closure of the company for which I worked. I went to the jobcentre, and they sent me to a government funded programme but there were so many criteria that I found it impossible to justify staying on and didn’t feel I could be support, I felt the staff cared but they were constrained by the DWP’s criteria in terms of offering services. The programme is linked to the DWP, so if you get paid, they get notified, and you get kicked off the program. I also looked into applying for a business grant which disabled self-employed people have access to, I found out that you’re given money; however, they specify how money can be spent. You can spend the money from a business grant on software, for example, but not a laptop I felt was paternalistic. The scheme decides what’s best for the client; they don’t trust the client to put forward their case for how they spend the money.
I have very little stability in terms of employment. I managed to get some stable income, but through connections, not by going through the interview process, I dreed to think about what would happen if that option wasn’t available! Due to my inability to get through interviews I have temped and freelanced for years.
I’ve had to fight to get my GCSEs and get into university.
While on my Master’s course, I had to fight to prove myself capable of doing a project. I wasn’t at that point diagnosed as autistic if I had been, I would maybe have had a greater understanding from the lecturers. I think they thought that I wasn’t doing enough to make a good impression when in truth, I didn’t realise that I should be trying.
After my Master’s, I couldn’t find work and needed to rethink my work field; I decided to go for something where self-employment was an option. The reason I choose the self-employed route was that I had trouble getting through interviews. I can see that individuals who have autism could end up either being self-employed and/or in unstable work as it is practically the only option left for individuals who struggle with the interview process unless, of course, there is a shake-up.
Due to my experiences, I have a few recommendations (not all recommendations have been thoroughly studied; some only have anecdotal evidence or study of the techniques are in the early stages):
Schools should work on flagging up students they think are autistic to have adjustments in place to help them. Adjustments should include help with fitting in as poor social interaction can result in anxiety at school and future socialization problems at work. Evidenced-based strategies should be put in place to help reduce bullying. Also, adjustments should be put in place in all stages from education to employment to enable individuals with things such as following instructions and planning tasks.
Diagnosis should be made as soon as possible. From talking to some people who are autistic, it appears that not all local authorities have the same procedure in terms of diagnosis. All individuals sent for diagnosis should be sent to a multidisciplinary team or a psychiatrist or psychologist [2]. At the moment, this recommendation is not adhered to by all local authorities.
Traditional interviews could be abandoned in favour of recruitment processes such as job auditions or open hiring. Open hiring is a process with no background checks, applications, interviews, or resumes [3]. Both these processes rule out the interview stage of the recruitment process. With open hiring, not having to submit a resume means that people with an unconventional/patchy work history have the opportunity to prove themselves on their own merits.
Organisations that help individuals get back into work shouldn’t kick them off the program as soon as they get some work. Like the government funded programme did when I had very little work, I found the workers generally friendly and interested in helping, although the system in which they worked meant that they couldn’t provide the real sustained support required. Organisations that help people with disabilities set up their own business should let the individual make a case for how they spend their money, the grants offer a certain amount and if the individual thinks that money is best spent on a reasonable laptop that will allow them to work more efficiently then they have a right to make that case.
All staff within an organisation should have autism awareness training to understand what autism is and how it can affect an individual.
In the meantime, with COVID meaning that my ability to gain temp work is impacted, maybe its time to try a different approach; one of the ideas that I had was to approach companies with a speculative CV and apply; the reason for this is that due to my different work history many firms will look at my CV and it will be discarded. I thus plan to apply to most jobs with a speculative CV as an approach and see what happens. I am no longer looking to do a Ph.D. in neuroscience. I was looking into the idea of documentary making as it was 1) something I could possibly be self-employed and 2) as I am interested in social and environmental issues. However, I am more interested in the research side of film and can see myself go into research in several settings; I might be best placed to look into Autism and employment; after all I have lived experience.
References
[1]. Gwen Dewar, Ph.D (2019) Working memory in children: What you need to know, Available at: https://www.parentingscience.com/working-memory.html (Accessed: 05/04/2020).
[2]. NAS (30 Aug 2016) Autism diagnosis for adults, Available at: https://www.autism.org.uk/about/diagnosis/adults.aspx (Accessed: 06/04/2020).
[3]. Tina Rosenberg (May 29, 2019) No Background Check, Drug Test or Credit Check. You’re Hired!, Available at: https://www.nytimes.com/2019/05/29/opinion/greyston-bakery-open-hiring.html (Accessed: 06/04/2020).