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The bewilderment of a very late autism diagnosis

Here's the thing about finding out I was autistic in late middle age: I was born autistic, but because I didn't know, I’d never understood what it was about me that always set me apart.

The bewilderment of a very late autism diagnosis 01

It didn't matter how hard I tried or how many challenges I set myself, I always saw myself as a failure because other people seemed to live their lives with ease and I did not.

After my autism diagnosis everything was catch up. There was a massive amount to process. I had to learn about autism and review my life in that context. My problem was that I had no context - I was a 50 year old autistic woman and there didn't seem to be any information about autism in middle age, or even adulthood; never mind about being an autistic woman.

I didn't know how to look at myself anymore: I had suddenly been identified as disabled but my disability had been as invisible to me as it had to everybody else. I had been masking for half a century and I hadn't even realised;. I had consciously copied other people ever since early childhood, but I’d always assumed that was what everybody did. I had concluded I must be very bad at it, because my version never seemed to be accepted by others.

I discovered that older autistic women belonged to a completely invisible minority. I am not neurotypical, or ‘your autistic son’, or ‘intellectually disabled’, or ‘transitioning to adulthood’. The only information on adults I could find was narrowly focussed on those with intellectual disabilities. How could I give information to my employers and colleagues, if all the information was written in that context? It made me feel like an impostor.

Having always camouflaged as a survival mechanism, I spent a full year trying to find a way of acting autistic. The literature provided a menu of options, but everything was a deficiency or an impairment - everything was pathologized and negative and my pride wouldn't allow me to act that part.

I was never offered any counselling or any support, as I struggled to process the diagnosis and work out what I felt about it. Like many recently diagnosed autistic people, I examined situations from my past and wondered which bits would have been different had I not been autistic? And I wanted to know how to adapt my life now: I wanted help to learn what to leave behind, how to abandon the stressful attempts to be like neurotypical people. I wanted guidance to help me to uncover my autistic self.

There was no support available for those of us diagnosed in adulthood; and there is almost none in 2022. Eventually, some of us discover an autistic community, which enables us to ask questions and provide some peer support.

After some years, I realised how traumatic my life has been: I've had to pretend to ignore feeling lonely in a crowd, pretend to get the jokes, laugh along when the jokes have been at my expense and bear the fact that I have been repeatedly bullied. I have been successful in several careers but have run away from all of them, usually because of bullying.

I think all late diagnosed autistic people are probably suffering from complex PTSD, but I feel unable to talk about it, as I don't feel that I will be believed. Being expected to continue the pretence of being neurotypical is how we are penalised for successful camouflaging.

Most of us have learned to blend in, mask our differences and as we grow older, we live with the consequences. Adapting to survive has taken its toll on my physical health and emotional equilibrium, but I manage. I swore, when I was fifty, that I would spend the rest of my life finding glory in being autistic.

About the author

Cos is an autistic speaker, in the UK and abroad. She teaches and writes about aspects of autistic adulthood, has worked on various research projects around health and welfare in autistic adulthood and co-authored research papers. Cos has also worked at the BBC, the National Sound Archive and in the theatre.

Cos

Thanks Emma, knowing we're not the only one to have particular experiences helps de-mysify autism, especially for those of us who find out later in life. So much of the information about autism diagnosis is about children with very limited life experience and with parental and statutory support. Or is so generalised and deficit riddled that we don't relate to it. There are peer groups for autistic adults on Facebook & some of us use #AutisticElders on Twitter.

Simon

50 is not that late imop. I'm 55 and only been aware that I might have somethong for a year or two. I don't know how autistic I am. Could be very mild. But I am sure a lot of my bad experiences have been shared by others in different situations such as perhaps gayness. Life is hard. One thing for sure is I have an autistic mother who at 85 doesn't know about it. Should someone tell her?

CosSimon

I know someone aged over 80, who seems to me very definitely autistic, but doesn't know it. As he's happy in his life, because his job suited him and he has a network of friends gained over a lifetime living in the same area, I've never mentioned it. If I did, i think he'd take great offence, as he's very proud of his robust mental health.

We can never know absolutely, whether someone else is autistic, so I don't think it's wise to tell someone they are, They may suspect, or even know they're autistic, but prefer not to discuss it.

If I thought it was helpful for someone to consider whether they might be autistic, I'd tell them about my own diagnosis and leave some printed information for them to read, so they can 'learn more about how it might affect me'. They may recognise themselves in it and will know it's a subject they can talk to me about. It's a gentle way to open up a delicate conversation - your mother may already be wondering, if she sees familiar aspects you both share.

I hope this is helpful.

Emma

Thank you for that Cos. It is just how I am experiencing things since my late diagnosis.
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Paul Gutherson
Tel: 01225 255 268
Email: paul.gutherson@ndti.org.uk

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