I-RAP
Improving Recognition and Understanding of Autism and Personality Disorder
Blog
How did I get to work on IRAP? I became involved with I-RAP as part of the dissemination panel working group and quickly realised how much I had in common with others in the research team. I read about Lindsay’s short but impactful life, and immediately wanted to be part of the I-RAP project, helping to give voice to those struggling with mental distress.
A bit of historical context:
I was diagnosed with a personality disorder in my mid-30s (17 years ago). It was a tumultuous period, and it wasn’t easy to have a family life alongside my mental-health issues. I was in and out of hospital multiple times due to various crises, and was with the home treatment team for some six months.
Eventually, I ended up in a mother-and-baby unit. There were other mothers there who also had a personality disorder, but I couldn’t work out why we were different. I didn’t feel that I could relate to other mothers with the same diagnosis, particularly as I focused my difficulties inwards.
A few years later, my already severe depression worsened, and I was given 12 sessions of ECT. It did serve to dampen my mood swings and regulate my emotions, but it also laid waste to my memory. I can’t remember most of my children’s early years, I can’t remember how to drive, and I can’t remember the seven languages I’d accrued over the years. Excruciatingly, I still forget what I’m saying mid-sentence, and have to make painstaking lists just to function on a daily basis, ensuring I don’t miss work deadlines and important conversations.
Some five years ago, I was in therapy. I kept going over my childhood, and wondering why I’d behaved so bizarrely. I used to go trainspotting and collected stamps and crisp packets. At school, I’d cower under my desk, as being in a full classroom was just too overwhelming.
Eventually, I asked my therapist whether he thought I was autistic, and he said yes! He then arranged for me to have an autism assessment, which I passed with flying colours. While I seldom mention my personality disorder diagnosis to friends, I readily divulge that I’m autistic.
Figure 1: "At school, I’d cower under my desk, as being in a full classroom was just too overwhelming."
Some key hints:
From the beginning, I found school challenging, and by the time I was 14 I was a prolific school-avoider. I would attend registration and would then simply stroll out of school. Nobody did anything – it felt like nobody cared. In the beginning I would go to art galleries and museums. However, things escalated, and I began to carry bags and bags of equipment with me: spoons and forks, a dictionary, a change of clothes (I would never know where I would end up sleeping), Sellotape… I would sit on the Circle Line, going round and round, reading books, and then the Bible and, when words became too much, simply music scores.
Figure 2: "I began to carry bags and bags of equipment with me: spoons and forks, a dictionary, a change of clothes..."
A-Levels came around. I did actually attend one French lesson that year. However, the teacher shooed me out of the classroom as she thought I didn’t belong. In the end, it turned out ok. I studied the night before each exam and memorised reams of essays. I ended up with offers from all the universities I’d applied for, and eventually went to Bristol to study Russian (I was obsessed with finding out my origins, who I really was – the essence of me).
During this time, I’d acquired a social worker and psychiatrist. I attended weekly appointments but, again, found them overwhelming. We eventually worked out that I could express myself far better on paper, so I would write these garbled missives to them, and they patiently read them. I continued to see them once I started at university, though I would always make sure I was suitably intoxicated as I needed something to buffer my emotions.
One day – at about the time I was 22 – I’d just seen my social worker and it had gone badly. I was – of course – drunk, and was too agitated to wait for a bus, so stomped into the carpet shop behind it to vent my spleen. A man – a beautiful man – was sitting behind a desk, and he motioned for me to take a seat. We talked for an hour: about literature, music, travel. Eventually, I left, but couldn’t stop thinking about him. I went back two weeks later and asked him out (I’ve always preferred the direct approach!), and we’ve been together ever since, having got married when I was 23.
I loved words, so it made sense for me to get a job in publishing. I started out at a book publisher’s but found the pace achingly slow. I worked there for six miserable months, until I found a job working in magazine publishing. This was a vast improvement and – even better – the company launched a current-affairs website soon after. Preparations before it went live were arduous, but my hard work paid off: I eventually became Managing Editor, in charge of 10 editors and, indirectly, some 50-odd researchers. As I walked into the office every day, I adopted a new persona, as if I’d put on an overcoat.
Figure 3: "As I walked into the office every day, I adopted a new persona, as if I’d put on an overcoat."
In the meantime, however, my father’s dementia (with which he was diagnosed when I was in my early teens) started to worsen, and my husband and I agreed to start a family as soon as possible, so that my father could meet his first grandchild while he was still able. Sadly, however, the baby came too late. I introduced our daughter to him when she was a few days old, but he refused to look at her and, when I look back at the photographs from this meeting, his head was turned decidedly the other way. In the end, my father died when my baby was six months old.
Figure 4: "I introduced our daughter to him when she was a few days old, but he refused to look at her"
I went on to have my second baby two years later. However, things were unravelling again. Sleepless nights and two babies under two meant I found it immeasurably difficult to perform at work. One day, I went to work happy as my trousers were feeling loose. It was only when I used the loo mid-morning that I realised I’d dressed in my husband’s clothes rather than my own! It was a sign that things had to change, and I soon left my job and started work as a freelance journalist. Sadly, though, things deteriorated, and I was diagnosed with psychotic depression and ‘BPD’ a few years later. It was an horrific experience, both existentially and psychologically.
I-RAP Experience:
I first became involved with I-RAP in April 2023. I’d been diagnosed with ASD some two years previously, but hadn’t really processed it as part of my identity until I joined the team and - more specifically - met Jennie Parker. She taught me that it was ok to have meltdowns and block out the world with headphones. I repeat behaviours obsessively to the point where my psychiatrist has diagnosed me with OCD – and that’s ok too.
Suddenly everything made sense. From carrying round all my worldly goods as a truanting teenager, to my dislike of eye contact, even with those I knew well. It also enabled me to find new communities of support, where I could share experiences and advice.
At the time, I was also studying for an MSc in Psychology, and diagnosis meant I could access support for my autistic needs which took the form of a weekly check-in with a specialist mentor. As well as this, I was offered free taxi rides to the university. However, I didn’t want to make avoiding public transport into a habit, so carried on using the tube, even though it was often excruciating for me.
Ultimately, with my autism diagnosis has come the ability to develop coping strategies for social interaction. I’ve been on a journey of learning and have cultivated routines. Although I still come up against challenges, my experience of autism has ultimately been largely positive, and through it have found acceptance, support and personal growth. The key factors that contribute to a positive experience include the presence of supportive environments, access to resources, and positive attitudes towards neurodivergence.
Figure 5: "The key factors that contribute to a positive experience include the presence of supportive environments, access to resources, and positive attitudes towards neurodivergence."