I-RAP
Improving Recognition and Understanding of Autism and Personality Disorder
Blog
Trigger warning: this section contains references to trauma.
Initial inspiration: How did I get to the point of recognising I might be autistic? This came via Words that Carry on (WTCO). Within my role as a Senior Peer Researcher at The McPin Foundation, I was asked if I would like to work on a scoping exercise on priorities for research, alongside the family and friends of Lindsay Riddoch. Lindsay died by suicide in December 2017.
What I hadn’t realised was that I had met Lindsay in a work context previously and what I had also not realised was the impact of Lindsay’s experience would have on me. Thank you, Lindsay, and thank you to WTCO; my life experiences may not have been the same, but I did experience extreme hopelessness and more - I cannot express this feeling in words.
What I can say is how things have changed since I was diagnosed as autistic in March 2021 and how this impacted upon I-RAP.
Figure 1: Fragmented
How did I get to work on IRAP? In 2020, Kirsten Barnicot at City, University of London contacted me to ask if I would be interested in submitting a co-produced funding bid to progress with this research.
By this time, my personal and professional interest in autism and ‘personality disorder’ had grown immensely, so of course I said yes!
A bit of historical context: My ‘personality disorder’ diagnosis appeared when I was in my early 30’s ‘gifted to me’ by a private healthcare provider, following ‘treatment resistant depression’, ECT, and lithium, amongst many other medications.
The diagnosis made sense to me, but I wanted to know more. Rather than go to a therapeutic community (didn’t fancy living with a group of strangers or risk losing my job), I enrolled in a psychology degree. I got a first! So, I went on to do an MSc in Clinical Neuroscience. I got a distinction! This was very different to my first experience of university where I studied English and Sociology, worked in a pub, got trapped in an awful relationship, learned ways to cope with all of this (not ideal ones).
The diagnosis allowed me to find other people like me through changing my career. I was happy and learned a lot from my Lived Experience colleagues who repaired and prepared me for the work I now do. This group of people have continued to be a supportive friend network, scattered around the country, which works well for me as we can dip in and out of being in contact and that is okay!
Figure 2: Cannot seem to reach the light at the end of the tunnel.
Figure 3: The long route to self-discovery
Some key hints that may have been missed as autistic flags: Losing my personal space had a big impact on my wellbeing, through selling my flat where I had lived alone for a few years. I do value my private space; a place to just be me.
Being promoted at work to be a manager many years ago was hard. I had little support and was oblivious to the idea that others did not understand that work was a priority over your personal life. I also did not understand the rules of working in a male-dominated corporate environment, or how to communicate in ways that were not direct and to the point.
Relationships were not something I knew how to do well, I believed what people told me and did experience ‘feelings of abandonment’. However, this was more around being treated badly in relationships and not knowing what was going on, when the person would return, or what they would be like when they did.
Having reframed this, it sounds more akin to the loss of control, certainty, predictability, and naivety that an autistic person may resonate with. Maybe if someone had helped me to see my naivety none of this would have been my experience.
It’s also recently come to light that I may have gone through menopause in my early 30’s (check here for more information). My feeling is that the emotional distress of early menopause, invalidation of my autistic self by people around me and by society, along with my inability to navigate relationships led to me meeting criteria for ‘borderline personality disorder’.
This does make sense, as we know invalidating environments and trauma often underlie a diagnosis of ‘personality disorder (check here for more information).
Understanding emotions wasn’t my forte. Self-soothing in a kind way wasn’t my forte. Therapy has never been my forte. I find therapeutic relationships hard…to the point that my life was endangered. However, if being autistic had been part of my identity sooner much of this could have been different.
Figure 4: Fitting it all back together
I-RAP Experience: After our team were successful in being awarded the funding to carry out this research, I started with City, University of London. This was less than 6 months after my autism assessment. Due to long wait lists, further exacerbated by Covid, this was a private assessment with an NHS recognised autism service. I needed to know if I was autistic before starting on I-RAP, as did not want to compromise a future assessment, nor did I want to mis-understand my identity as a Lived Experience Researcher.
At this time, I had not processed my new autistic identity and it was through I-RAP that I was able to start accepting this. Speaking to people about their diagnostic experiences, how many labels they had acquired along the way, the overshadowing that occurred, and the burnout they experienced in some therapies, all resonated. We were united in our feelings of frustration and invalidation.
Whilst I am not an activist, and mostly avoid social media, I am an advocate for promoting the views of people who have been harmed through misdiagnosis and treatments that are not set up for autistic needs. It has been tricky to keep my own bias out of the research process and I hope that I have navigated this well enough. Our research team and Lived Experience advisory panels have been so helpful here, in keeping me grounded to the research and how data is interpreted.
When asking people about their diagnostic experiences, it has been important to keep in mind that I was interviewing women/AFAB folk who had a personality disorder diagnosis but thought they might be autistic or were autistic (including self-identifying). So, there are people out there who do value their ‘personality disorder’ label and that is okay. That said, my personal view is that this is often a label given when no other explanation can be given – but that is not how it should be!
I have learned how important it is for clinicians to spend time with someone, to see when masking slips and stims leak out. I now know that I spent years trying to be someone else and the relief of finally being me is amazing.
I can live the life worth living that Marsha Linehan talks about, and no longer feel ashamed or guilty for not ‘succeeding’ in therapy (especially unstructured or attachment-based ones). Guilt is never a good feeling, nor is shame. We are people; life has not been kind; so, whether you feel personality disorder, or another explanation fits for you, please remember this is your life and YOU know you best – don’t let others tell you otherwise.
Figure 5: Now I can see the trees and the beauty that was previously out of reach
Choose what flower you want to be:
If you want to be a cornflower, be a cornflower. If you want to be a poppy, be a poppy...
Figure 6: Flowers
Meet Jennie!
a lived experience researcher from City, University of London, who has lived experience of both personality disorder and autism diagnoses. She is working as a co-leader/researcher in I-RAP study. She loves running and being in nature.