Embracing your autism (and what happens when you can’t find your tribe?)

I imagine that many of you will have heard this statement… ’Find your tribe!!’ This is a statement that autistic adults – and sometimes kids – are told. The Autistic ‘tribe’ or neurodivergent peer group is a place where you will be accepted. When you find your tribe your sense of autistic pride, self-esteem and value will increase. When you get embrace your autism your whole life will change and you will accept who you are and lots of other good things. Sounds like a very good thing, and this does seem to be what happens for many of us.

But what happens for people who do not ‘find their tribe’? What about people who are  autistic and for a variety of reasons they cannot accept it or be positive about it? What about when your memory of being ostracised and bullied makes you want to keep ‘acting’ and ‘masking’ in terror that if you are ‘out’ as autistic that bullying and abuse will get worse? For many people finding their tribe is not at all easy.

I have a personal story about this very issue. For the past 13 years I have been as very out loud and proud, visible autistic advocate but for seven years after I was diagnosed I couldn’t even entertain the notion that I might be autistic. While deep down I knew my then recent diagnosis fairly accurately described my experience, it was just too hard to imagine that I was autistic. I was diagnosed in 1994. When I was diagnosed the diagnosis was very new. Almost nobody, including many mental health clinicians, had heard of this thing called Asperger syndrome. My parents were told that Asperger’s was incredibly rare and that only one in 25 people diagnosed with Asperger Syndrome were women and girls (I didn’t know about non-binary gender then so saw myself as a kind of woman by default). I was a rebellious and very troubled twenty-something when I was diagnosed. I had spent years trying to distance myself from the ‘nerd’ tag I had been victimised because of in school. My diagnosis meant a number of things to me, and none of them were good. Consciously I thought it was my parents making excuses for my poor behaviour. I was doing my best social chameleon act in order to fit in with the world I found myself in. From the limited information I had, it seemed Aspergers was a diagnosis of being a nerd. To my mind it meant that I was destined to be a nerd all my life and there was nothing I could do about it. When I was being bullied in school, a lot of the attacks also centred around any apparently having an intellectual disability. At the time, my limited understanding of autism was that it was an intellectual disability. You can probably  understand why I felt trapped by the diagnosis rather than liberated. 

My eventual acceptance of my diagnosis was very closely bound up in my perception of myself. Twenty-something Jeanette had hated themselves. They had a very low self image and actively sought out negative things. It was somewhat telling that the moment I accepted my autism was when I was in second year of university. I had just won an award for being top of my year in a class and was feeling more confident than I ever had before. ‘Maybe I should check out that autism thing?’ I thought so set about doing so. I remember watching a video by Dr Wenn Lawson – who is now a good friend – and he was saying things about his experience which resonated strongly with me. I started what was actually quite a lengthy process of accepting and valuing myself as autistic.

I didn’t suddenly write my life story and start giving presentations on autism. For me it was still a difficult truth to accept. I spent the next few years being quite shy about discussing my autism. I felt like everyone I told would probably hate me for it. I had internalised a lot of ableism. The turning point was when I met my mentor and most positive influence Polly Samuel who encouraged and supported me to write my life story. Thankfully everything sort of aligned and when the book was released and media outlets were asking me to talk about my story I was in a good place to do so. Now I am quite likely to discuss autism with a taxi driver or a receptionist at the doctor’s office! I am very much so out loud and proud Autistic. I have found my tribe and it is good, even if it took me a bit longer to find it than most.

I suppose what people can take from this is that people have complex histories and circumstances which may make it hard to accept that they are autistic.

I have had many interactions with people who feel unable to connect with the ‘tribe’ for various reasons and many others who are taking their time much like I did when I was younger. People do not have to conform to any particular journey for accepting and embracing their autism. It is a good thing for autistic people to accept who we are simply because being autistic is a fundamental way of being but people struggling to find their tribe do not need to feel bad about this. It is not a reason for judgement or a character flaw. Life is a journey. In my journey I spent a good ten years either not accepting or being very coy about my autism and now I am doing all the advocacy work I do and hopefully promoting positive things like autistic pride. We are all at a point on our journey and that is OK, but I am very glad to have embraced who I am as it feels right. 

IMG_7139

Advertisements

‘I’m not being rude but I have no idea who you are!’ – Thoughts on Prosopagnosia

The title of this post is something I have said – or thought – on many, many occasions in my almost 44 years on this Earth. Most people have an innate ability to tell one human being from another. If they meet someone then they remember what the person looks like most of the time. I do not. Most human faces blur into each other and I cannot remember people I see all the time, including work colleagues and family members. When I was a toddler my mum and brother and I went overseas and left my dad behind. When we returned three months later I had no idea who this scary guy with a beard was and why he seemed to know my mum, brother and me really well! I spent my childhood, teenage and young adult years thinking that may inability to recognise human faces was unique to me. I was very embarrassed by it and thought it meant I didn’t care about people or wasn’t interested, even though that didn’t tally with my experience. When I was in my late 30s I saw an article about something called ‘prosopagnosia’ or face blindness. Apparently there were a lot of people in addition to me who struggled to recognise human faces. I was delighted to not be alone in having this rather embarrassing quirk of neurology.

Prosopagnosia is not an intrinsic part of autism. Non-autistic people also experience it but it is more common among autistic people than neurotypicals. I do not understand the mechanics of it well but I know that people with prosopagnosia use different parts of our brains to interpret faces then others do. I can recognise a few people’s faces but most people I struggle with. I recently worked out that I have the greatest difficult in recognising the faces of cis gender people – those who identify with their gender assigned at birth. However, I usually remember the faces of people who are gender diverse / trans. I have no idea why that may be.

I used to be deeply ashamed of not remembering people’s faces. It caused issues at school with bullies as I often couldn’t tell them apart which only served to add fuel to their cruelty. I would develop elaborate ways of figuring out who someone was through the context of their conversation or what they were doing. I had an exhibition at a major art gallery when I was a student in 2005. I had a twenty minute conversation with someone and had no idea who they were until I got home after the event!

Simply saying ‘Sorry, I have issues with recognising faces. I am not being deliberately rude’ would have solved a lot of my problems with prosopagnosia but my shame at forgetting faces was bound up in my shame at the time at being autistic. I have not always been an enthusiastic and very visible autistic advocate. It took me over ten years from the date of my diagnosis to me getting to a point where I accepted my neurodivergence and began to see my autism in a positive light. That shame was immense and was mostly created by bullying and being shamed by others for being somehow different. My main goal at high school was to be accepted by my peers – something that never really happened. Anything which made me seem ‘weird’ or different was bad to my mind. The fact I couldn’t recognise people was something I had never heard of before in others and definitely fitted in my view of ‘weird Jeanette things’. It was only really when I started to view myself as a proud autistic person years later that I become OK with it.

These days I tell people if I don’t recognise them and explain the reason. Not only does this make my life easier it also means if that person meets another person with prosopagnosia they will have some understanding about what it means. The statement I usually use is ‘Have I met you before?’ If they answer yes I respond with ‘Sorry about that, I have face blindness and don’t always recognise people.’ 

One peeve I have around this is when people who evidently don’t have prosopagnosia say ‘Oh, I’m hopeless with names and faces.’ I know they are probably trying to make me feel less uncomfortable, but I am actually not feeling uncomfortable so when they say that it comes across as them dismissing my experience. It’s a bit like the old chestnut ‘Oh but we are all on the spectrum somewhere!’ (We are NOT ‘all on the spectrum somewhere’. If we were, it wouldn’t be called autism it would be called ‘how everyone experiences the world’.) These sorts of statements are difficult because the person saying them often doesn’t consciously intend to dismiss and invalidate but they actually do.

I have found it much considerably easier to tell people about my prosopagnosia than pretend I don’t have it!  In fact when I started to tell people why I don’t recognise them it was like a weight had lifted. It was a liberation. For me owning my prosopagnosia is part of being an out loud and proud autistic person so I view it as part of my advocacy, given it is such a common experience for autistics. It can be a difficult thing to manage but like most things, it can be improved by applying strategies that work. It is nothing to be ashamed of – in fact being ashamed of it will make the impact of it considerably worse. It is part of how a brain can be wired, part of the neurodiversity of humanity. It is just another little part of what makes me ‘me’.

10345928_952442271503827_2389361033428212312_n