I’ve been thinking about what happens after diagnosis.
For me it has now been over a year since I realised I was autistic. I sought professional validation of that because for me, it added certainty and reassurance. I appreciate that not everyone has access to this, or indeed wants it. Either way, I think that realising you are autistic late in life has a big impact. For this blog post, “diagnosis” includes either professional diagnosis or self diagnosis.
For me, realising I was autistic was a huge adjustment. It was a relief to finally understand why I had felt out of step, struggled with certain things and seemed to have emotions that worked differently to most other people’s. But the emotions involved were complicated. And because processing emotions is something that can take a long time and a lot of misunderstanding and introspection for me, I thought it might be helpful if I list a few of the things I felt. I did not feel all of these right away, I would say it has taken me a full year to process everything and feel comfortable that autism is an important part of my identity (but not the only important aspect of my identity.)
When the penny dropped (in my case through reading the stories of other autistic women who were diagnosed later on in life) that I could be autistic I was quite shocked. It was a strong emotion and I felt quite fearful and unsettled. Many of the things I believed about myself were challenged – the whole story I had built up about my life up until now seemed potentially false.
I had a lot of fear about telling people close to me that I thought I could be autistic, and a lot of fear about what that meant for me going forward. I don’t think this is because I thought there was anything “wrong” with being autistic myself, but that I had no idea what this meant in terms of fitting in, and relationships. Would everything change? I am not a big fan of changes that I am not in control of, and this felt beyond my control.
I did a lot of obsessive research. I tested myself with online tests. I read all kinds of books, blogs and articles about autism. I became immersed in the topic, as a “special interest,” or obsession. It took up a lot of my time and was very self-oriented, although coincidentally my friendship with another family with autistic members deepened at this time. The whole project of being, or becoming, or learning my identity within the frame of, autism became all consuming.
I felt sadness, for missed opportunities when knowing I was autistic in the past could have helped me understand why things turned out the way they did. I found myself churning through my own life history. I asked my parents about my early development and recalled situations from childhood. I turned, all over again, a lot of failed friendships and relationships. There was also some grief for future me – some parts of my story involved struggling with certain situations and thinking that if I could just “get my head around it” or learn enough from self-help books I could change. I realised that some traits I had that could be seen as “flaws” were hard wired.
I don’t think I expressed this as much as some of the other emotions but there is some anger, sometimes about the way I’ve been treated by others but actually, if I’m brutally honest, about how I have treated myself. Many situations in life can be boiled down to a lack of self-knowledge or making poor choices. I think I had a few angry rants about this on social media.
I admit I felt sorry for myself. Not because I was autistic, but because of all the related implications and what a drag they can be and how much easier it is for “everyone else.” Poor me. This aspect for me was part of an ongoing project, namely working through internalised ableism. The shift in understanding about disability issues doesn’t happen overnight.
The reality is that I needed a lot more help and support systems in place than I had had for most of my life. I have a part time job and a family and for me that’s a lot of responsibility. Some of this support came from myself and my immediate family, such as making better meal plans, breaking down tasks, asking for help. I paid for some professional support to manage my health and eating. In other cases it was getting other people to come with me to appointments or help me fill in forms.
All of this involved disclosing my autism, which was new to me and made me anxious. But ultimately it has not been that bad and I’ve mostly had positive or neutral responses. When I spoke to my GP about it, she accepted my autism without question; there was no issue with my optician when I mentioned visual phenomena; education professionals have made themselves available to help me advocate for my child in school, which I previously struggled with.
As I mentioned, it is easy to constantly think about autism and how it is affecting my life. As time has passed I have gradually allowed this to move into the background – only somewhat. I think initially my autism self-awareness dial was turned up to 11. These days it’s more like 7, but sometimes at the front of my mind in a challenging situation. It is a very important part of my life and my identity, but autistic people are all very different! There is so much to each personality and life experience.
Overall I am happy to be autistic. I like my mind; I’ve had an interesting life, even if there have been challenges. I understand myself better now, I am kinder and more supportive to my own needs. I have connected with many people and received interesting information and insight that has helped me to reframe my life. I believe having the time to truly know oneself is a privilege and a gift.
Take your time
My personal belief is that working through all of these emotions and changes takes a lot of energy. it can be exhausting and can bring about physical and emotional shifts. I think I have had more meltdowns, and more burnout. Part of me needed to vent that emotion and take that rest – even if it was not in my conscious control. Getting a diagnosis is not the end destination, it is the start of a journey. It can be a bumpy ride and help is not always offered – you have to seek it out.