Navigating the emotional journey of an adult autism diagnosis can resemble a rollercoaster ride, with its highs and lows. In this personal account, Vetlife Trustee Kirstie Pickles, shares her experiences following her diagnosis.
It is now three and a half years since my adult diagnosis of autism. This resulted from my daughter’s diagnosis which led to reading about autism and women and recognising myself in those narratives. There is so much to process post-diagnosis I truly feel like I have been on an emotional rollercoaster.
Elation
Initially diagnosis was a complete revelation for me. I was elated to finally have some understanding of why I seemed to find life so difficult. My life experiences had led me to believe I was defective in some way and had verbalised this on numerous occasions to psychiatrists and psychologists who told me I was depressed and anxious. I was, but this did not explain my difficulties to me. I was convinced there was something wrong with me.
It was incredible to suddenly understand that the reason I had found things so repeatedly difficult was because I saw, interpreted, and interacted with people and the world in a different way to the majority. I wasn’t defective, I was different. I was joyous of this new filter on my experience.
Relief
For all these same reasons, I felt great relief at finally knowing why I felt the way I did. It is extremely frustrating, self-defeating, and mentally tiring to constantly try to fit in, be a better, more acceptable, version of you. I felt a terrible person a lot of the time because I didn’t react or respond how people felt I should, even though I was trying so hard to fit in. I usually did pretty well until I got stressed or anxious and then the mask would fall, and I couldn’t filter my responses fast enough to always be socially acceptable. It was a relief to have some of that weight of responsibility taken from my shoulders by a ‘label’ or diagnosis. Communication (the transfer of information from one person to another) is a two-way process and it is far too common for all the responsibility to be put on the neurodivergent individual.
Hope
Having spent long periods of my life feeling hopeless, I now had hope. I assumed this newly acquired knowledge and label would instantly allow everyone else to understand me. I was confident that my difficulties would now be over, and I would no longer experience situations that lead to extreme low mood, time of work, leaving jobs, and considering leaving the profession, and life, altogether.
Anger
After a while I became aware of feeling some resentment at having reached my late forties without autism being raised as a possibility. I can understand not being picked up in childhood as I was very studious and conformed; my focus, meticulous nature, and the structure of school really suited me, I could excel. It is the kids that create chaos in the classroom that get referred for diagnosis. My obsessive interests in horses and becoming a vet were so socially accepted. Also, back in the 70’s and 80’s, autism was very much believed to be a male condition.
However, my adult life has been interspersed with episodes of serious mental ill-health. Surely one of the many mental health professionals I had spoken to should have queried the possibility of autism. I ticked so very many of the boxes, from the way I interpreted events and people, how I behaved, and the negative coping patterns to which I had resorted.
Grief
There was also grief for all the missed opportunities of preventing, or at least mitigating, years of depression and anxiety and a feeling of being defective and ashamed of who I was. It is well recognised that autistic individuals diagnosed and supported as children have better self-esteem and mental health outcomes than those diagnosed as adults.
As I came to understand situations that I found triggering, and were therefore best avoided, there was also a sense of grief in having to admit there are certain aspects of veterinary work to which I am not well suited. Having yearned to be a vet from 11, there was an element of sadness in knowing that I was not well suited to some aspects of the job.
Disappointment
It is hardly surprising that my naïve hope of everyone instantly accommodating my autistic needs fell spectacularly short. I didn’t even understand my needs! It was disappointing and frustrating to still experience the same miscommunications and difficulties as before diagnosis. Largely, people really wanted to help, they just didn’t know how. My line manager tried supremely hard to help, the pathway just wasn’t there to support either of us. I found HR services and occupational health knew exceedingly little about autism, particularly in women, and certainly not in a clinical veterinary environment. Eventually I was connected with a neurodiversity advocacy service who helped me apply for Access to Work and worked with me over a number of months to figure out what reasonable adjustments I needed. For me, this was vital in moving forward.
Passion
The most enduring emotion I am left with is passion and the desire to initiate dialogue and facilitate change. I have found great autistic joy in becoming a trainer on the National Autism Trainer Programme which delivers training to upskill those working in the NHS, community mental health services, educational settings, and criminal justice establishments. Too many women are still undiagnosed or misdiagnosed, too many autistic individuals are being failed in school, are unemployed, or under-employed. The list goes on.
Being able to be your authentic self without fear of reprisal is so important. Those closest to me have said I have become ‘more autistic’ since my diagnosis. I have just stopped trying to hide my differences and to accept and advocate for them. It is vital to note that I have not been on this journey alone. My whole family has been on the roller coaster with me to some extent, and I am so grateful for their unwavering support. They don’t always get me, but they are always in the wings cheerleading.
Kirstie Pickles, Vetlife Trustee
