I didn’t know I had an invisible disability until I was already a parent/carer, that’s how invisible they can be.
You see, I knew a lot about my sensory challenges, the difficulties I could have forming and maintaining relationships and the frequent experience of overwhelm and burnout; I knew my experience of the world was ‘different’ – somehow ‘harder’ than others’ – but I was conditioned to believe this was my fault and didn’t realise I was autistic until I had a child who was.
I already knew I needed to focus a lot of time and energy on maintaining my mental health and wellbeing (mainly through meditation and a physical yoga practice) and had taken many steps over the years to accommodate my own needs. But I had always internalised there was something ‘wrong’ with me and my autistic diagnosis was a big awakening: there is absolutely nothing wrong with me, I had been trying to conform to neurotypical expectations and it hadn’t been working!
In many ways, I benefited from not knowing who I truly was over the years – certain freedoms and opportunities were afforded to me that a disabled person may not automatically be given – but, really, not knowing who I truly was has been such a barrier in my life.
The moment the penny fully dropped – in an online workshop on autism in girls – was such a relief. My suspicions had been growing for a while; as we’d been researching ways to support our child, each strategy was also supporting me. Finally it was in that Zoom workshop, on my sofa, pre-Lockdown (but in our own version of one due to our child’s needs), that I realised there were certain things I’d always done that not everybody did – like rehearsing conversations – and do you know what? It felt absolutely wonderful to finally grasp: my brain works differently from neurotypical folks and there was absolutely zero point attempting to make it work any differently than it does, neurodivergently.
What’s happened since then – approximately three years ago – is I’ve been diagnosed and so has my kid and we have found so many ways to live together that support both our needs (which are often not the same or complimentary). Our life is joyful, connected and we have some truly amazing experiences together. I come across people all the time who seem to think it’s a disappointment that my child is disabled or who congratulate me on my exceptional masking, ‘you’d never know’… I am working on unmasking but it’s a slow process when you’ve spent almost four decades trying to suppress your true nature.
Of course, sometimes it’s hard and there are many challenges and obstacles in my life and my child’s but none of them are because there is inherently wrong with us. Mostly, they are to do with accessing support or making sure the correct accommodations are made. Very often we are able to access experiences and opportunities together with a little forethought and careful planning – most public organisations and events have been incredibly welcoming and met our access needs with grace.
Our life is fulfilling and we are – currently – thriving and I will work tirelessly so that the freedoms and opportunities afforded to me ‘before’ I was autistic are automatically given to any disabled or neurodivergent person (with the appropriate accommodations, of course) because, sadly, that is not always the case. It should be.
1 thought on “Discovering your invisible disability as a parent/carer.”