It is well recognised, at least within the autistic community, that functioning labels are not useful or affirming. It’s good to see them being used much less frequently, and people instead often focussing on a person’s support needs. Importantly though, these support needs can and do fluctuate for most if not all of us. I think the dynamic nature of our needs is an area where there is one of the lowest levels of understanding and acceptance when it comes to autistic folk – although of course there are sadly many of these.
For me, I struggle internally to balance the two very different sides of my experiences. There are two perspectives you could take on how I live my life and what it looks like to be me. On the one hand, there is the version of me that most people see, the one that shows up in the professional world and that, if you don’t know me very well, is all you’ll often see of my reality.
I have a pretty decent corporate job and a long career that I’ve built up myself, jumping into completely new roles and industries multiple times and finding my feet easily in each. I have an honours degree and am studying at post-graduate level currently. I studied both my undergraduate and now while working full time. I have a mortgage on a lovey home and am financially comfortable and independent. I’m married to a wonderful husband. I’m a mother and a step-mother. Outside of my day-job I’ve made small inroads into an advocacy role as I want to challenge the narrative that’s out there and make people aware of the realities of life as an autistic adult. I have set up a peer support group to help other neurodivergent folk. I’m approaching 40 and I have achieved most of the tick-box items that you’re ‘supposed’ to have by this point in my life.
This is indeed me. It’s true, albeit often with a heavy amount of masking. I can and do do these things. I am that person, even if sometimes it’s painful and incredibly hard and a conscious effort to maintain. There is another side though, one that I often hide. Because it’s not socially acceptable, and even I still have a level of internalised ableism that makes it hard to acknowledge to myself, let alone share with others.
This side is focussed more on the things I can’t do. I struggle to drive anywhere by myself and even public transport often overwhelms me. I have had to be rescued from places by my husband on many occasions because I get so overwhelmed I physically cannot get myself home. If I’m alone at home, I’ll often struggle to feed myself in a suitable way. I struggle to cook meals that require any amount of multi-tasking – making breakfast at the weekend where people want different types of cereal or toast often leads to meltdown. Left to my own devices and without specific breaks actively scheduled in, I’ll often forget to drink or go to the toilet – which has led to many instances of UTIs in the past
I struggle to go to new places by myself and will spend hours or days in a state of complete panic. I’ll do dry-runs with a safe person beforehand just so I know what to expect. Some days I can’t leave the house at all by myself. I cannot make phone calls that aren’t specifically work-related or scheduled in advance with a clear plan and agenda. I can’t book appointments for myself if these require a phone call. I have avoided doctors and dentists for months or even years because of this in the past, to the detriment of my health.
I have done a proper weekly supermarket shop by myself a grand total of twice in my life. I cannot do it now and struggle to even go into a supermarket alone. Small changes will completely ruin a day or even a weekend. I get easily and frequently overwhelmed to the point of meltdowns, which are messy and difficult for both myself and others around me.
These two sides of me are the same person. I am all of these things simultaneously. Sometimes I feel like I can do anything, others I worry how I’ll just get through the day. From the outside, very few people see any of my struggles. I live in fear of people realising just how difficult I find certain ‘simple’ things because I know that then they’ll doubt my abilities in general. Everything will be called into question and they will stop taking me seriously. More than that, I worry what that means for my family. Will people assume I am an unfit mother? Will it impact the amount of autonomy I’m given in certain situations? Will it all come back to haunt me in the future?
But this is my reality, and it’s complicated and messy and difficult to get your head around if you don’t also have the same conflicts. And it’s something I want to talk about now, because I don’t want to keep feeling ashamed. I can do some things incredibly well. I struggle with others. There are some I doubt I’ll ever be able to do without significant levels of help. But knowing what help I need and how to get it is so important, and not talking about the difficult parts doesn’t make them go away. Shame grows in the shadows, in the things we don’t dare speak about. I can be both things, at the same time, and as long as I understand myself, I can figure out how to make things work and build a life where I am supported and able to thrive rather than simply survive.