Ursula’s story
#NowIKnow Ursula’s story…
I want to raise awareness of just how overlooked autism has been, especially among girls and women, who have had a history of not being recognised, disbelieved, or incorrectly diagnosed with some other condition.
It’s really important to continue to challenge the stereotypes around autism, and the only way to do that is to continue to share our stories. I hope that my story will be relatable and that it will help someone else.
I have had deep issues with anxiety and low self esteem, built up over long periods of time. It was invaluable getting a diagnosis (January 2020), as I now have a much better understanding and acceptance of myself, which is slowly allowing me to heal. It’s shocking to think that I was discouraged by GPs from getting a diagnosis when I first raised the possibility of autism in 2010. One said I ‘did not want that label’ (promptly trying to assess me for OCD instead), and another thought it probably wouldn’t be helpful, even if I were autistic. I want others to know that my experience of getting a diagnosis has been the complete opposite of that.
"Apart from having a much better understanding of myself, I finally feel validated, and know that I am not alone."
Apart from having a much better understanding of myself, I finally feel validated, and know that I am not alone. I know that I am differently wired, and that is OK. I do also feel a sense of anger, frustration and sadness at how I was treated by others for many years, but with this better understanding of who I am, I am now actively advocating for myself, and trying to find ways of effectively communicating some of the challenges I face. Even though things can still be incredibly difficult, having this awareness means I know what I’m dealing with, and I can come up with more effective strategies to cope when things get rough. One other very positive outcome is that, when I opened up to my Mum about my diagnosis, she accepted it and realised how much it made sense. I feel much closer to her now, and that means the world to me.
I have always been socially motivated, but often felt like a fail because I couldn’t seem to get it right, and then felt like an alien as a result. Throughout my adult life, the anxiety was unbearable, and I had incredibly low self esteem. This was particularly an issue when I reached university, and carried on once I entered the workplace. I also experienced severe depression, and have been suicidal on at least a couple of occasions.
Throughout my life I was told on many occasions that I was over-sensitive, selfish, overreacting or too serious, whether it be in a school, work or family situation. I felt that I was frequently upsetting someone else and that their needs were more important than my own. I felt like a pain and a burden, so I started masking, bringing out those traits of mine that I thought were the most likeable. Because I am a friendly, cheerful and generally kind person, I started emphasising those traits, while trying to hide the anxiety or squash all the reactions that would be considered to be over the top. This did not always work so well for me, and the mask would be dropped when things got too much. People would see that and often become unfriendly, even angry. As a result, I felt conflicted. I wanted to make friends as I got older, but I felt like I wasn’t able to be myself with people, because I didn’t think they would like me if they saw the ‘real’ me. If I did end up with a friend I thought I could be close to, something would invariably happen to push them away, because I would be very open about everything, especially my emotions, which have always been very intense, and hard to manage.
Relationships with others were generally a challenge. I started people-pleasing as a means to go along the easiest route possible…to minimise conflict. This often meant that I just followed along with others and completely repressed my own needs, opinions and discomfort, even though I felt like I was imploding. This extended to romantic relationships. I didn’t really understand what it meant to be in a relationship when I was in my twenties, so I would go through rejection after rejection, not really understanding why. I would continually become obsessed with someone who, in hindsight, was really unsuitable for me, but I’d try and pursue things anyway.
"Relationships with others were generally a challenge. I started people-pleasing as a means to go along the easiest route possible…to minimise conflict."
Where I felt happiest was spending time alone, engaging in my interests. It became difficult to share or engage in these fully as time went on, however. I sometimes got made fun of, or got told I was too obsessive, and was often met with exasperation. I started to feel anxious about engaging in my interests, and began repressing those too.
I want people to understand that autism is a spectrum, and that no two of us are exactly identical. I want them to realise that all of their preconceptions about what it means to be autistic are stereotypes, and likely to be wrong. We all have unique personalities and a unique set of challenges, just like any human being.
I also hope that there will be more awareness that there are a range of challenges associated with being autistic that might not be obvious (eg sensory issues, executive functioning difficulties, etc). This is often not even recognised by those closest to us, and we often get blamed for things we find very difficult to do. I also think there is a huge gap in knowledge (even by health professionals) in terms of recognising how much many of us have had to mask to try and fit in and be acceptable to non-autistic people. They don’t understand how costly that is to us, in terms of mental health, and how much energy that takes.