Wednesday, 17 November 2021

Autistic women and girls, late diagnosis and masking

This week I was immensely cheered by the news of two female celebrities announcing that they have recently received an autism diagnosis. Melanie Sykes opened up about her late, recent diagnosis at the age of 51 in a video on her Instagram page @msmelaniesykes. A couple of days later Christine McGuinness talked about her AQ assessment and earlier life experiences in a long chat on the Loose Women show.
Steph, dark haired mum, with an arm round each of her girls, aged 9 and 11. All are smiling at the camera
Photo of me with my two girls as I'm not able to directly ask Mel and Christine if they are happy with me sharing one of them!

Mel is currently working on a documentary with Harry Thompson, a PDAer who I've listened to and learned from for the past few years. Incidentally the documentary is about the education system and how it doesn't work for many children, a topic close to my own heart - please do pop over to my Not Fine in School posts to read more. In her video Mel mentioned briefly that her son was diagnosed with autism some time ago, so she understood what autism was about. She hadn't really considered it for herself though until she spent some time with Harry, and he suggested that she might have ADHD and an autistic profile. 

Mel described how being diagnosed felt incredible and there was a sense of relief for her. She also talked about a sense of mourning, not because she wasn't happy with the diagnosis, but because she wishes she could have known sooner, to have been able to understand why some things in life went the way they did. Mel was keen to point out that it was a positive diagnosis because it has helped to make sense of her past life. 

Christine has spoken out about her three autistic children several times over the past few years but this more recent chat focused on her own diagnosis. Her assessment took place during the process of filming a documentary about life with her autistic children, when the question of why she and her husband have three autistic children was raised. The thought that it was most probably genetic bubbled to the surface and led to both her and Paddy being assessed.

Christine talked about how she is not very social and doesn't feel she has a lot of friends. She can hold a conversation on screen with people she knows but struggles to know how to build a friendship, and worries about not knowing what to say to people. Her school attendance was bad and she left at 14. She was feeling overwhelmed at school, not fitting in with any groups such as sporty or drama types, and found it easier talking to the adults. When she walked into her GCSE exams, even though the room was silent she could hear the sound of scribbling pencils so loudly and became so overwhelmed and upset that she left without being able to complete them.

I loved when Christine said that the best thing to come from her diagnosis was the fact that when it comes to the time to tell her children they are autistic, she will now be able to tell them that they are 'just a bit like mummy', it won't hold them back and they won't feel so alone. I honestly wish I had been able to do that when we told our daughter she was autistic when she was around ten years old. Christine also talked about how she barely left the house for a period of 8 years in her twenties and as mum to a girl who barely leaves the house now, this gave me hope for the future.

What's it to me?!

So why I am so happy about this news, you might be asking? I've been blogging about our family's experience with autism for over 11 years and in that time I've written a few posts about maskingautism and girls, including one titled 'Can girls have autism too?'. Back when Sasha was diagnosed at the age of 2, most of the literature on autism that I came across described autistic boys. There was said to be a 4:1 ratio of boys to girls diagnosed with autism but I did find data that suggested the male to female ratio for PDA was more like 1:1. The ratio has since been updated to  reflect 3:1 and there's a great article about autistic women on the National Autistic Society website explaining some of the reasons for this.

Fairly early on after our daughter's diagnosis I met with a group of mums who all had young girls diagnosed with autism. It was a relief to know there were other autistic females out there and that my girl wasn't the only one, and I think that relief was as much for her and her later life as it was for me. I also thought that the Pathological Demand Avoidance presentation meant that my daughter didn't seem all that much like the other girls, but I've since come to realise that of course every child is an individual. That goes for differences in gender too, of course.

But for those females who do relate more to other females, this news may just help them to understand themselves better. It could open doors for other families who have girls who are struggling at school for whatever reason, or who look back on their own lives and wonder why things didn't work out the way they would have liked.

There are other female 'celebrities' already diagnosed, and lots of autistic advocates such as Carly Jones MBE and Siena Castellon who are doing amazing work in helping the world understand autistic females. Adding more positive voices to the discussion is to be welcomed. 

There is another reason why this recent news has been so interesting for me, and that's the late diagnosis angle. Like both Mel and Christine, I am a mum of neurodivergent children. The thought that autism may be genetic or hereditary has been undergoing research for some time. I've had a few conversations with various people lately about autistic traits and whether any of these could apply to me. It's definitely not a discussion I'm afraid to have or shy away from - in fact I find it very interesting! On Thursday 18th November, I chatted live on my Steph's Two Girls Facebook page about all these issues, with Danielle from PDA Parenting, also mum of neurodivergent girls. 

This leads onto a phrase which I've heard said many times over the past eleven years - 'ah, well we're all on the spectrum somewhere'. I love this article by Nancy Doyle examining the question 'is everyone a little autistic?' Another great discussion point, but my personal view is that whilst we are all on a spectrum of humankind, there is a point at which autism is diagnosed (using a variety of assessment tools) and it is only those who receive scores higher than the given cut off point who can count themselves as being on the autistic spectrum. Of course that then doesn't include all those people who have not yet been able to access an autism assessment - whether that's because referrals are not forthcoming, the wait for the NHS is too long, private assessments too expensive or simply because masking has gone on for so long that traits have been missed....

Honestly, I would love to be assessed to find out whether I would be classed as autistic/neurodivergent, and I'd be happy with the result either way. Maybe society will eventually arrive at a time where it is unusual for adults to be diagnosed late in life because children with neurodivergent brains are understood better at an earlier age.

2 comments:

  1. "She can hold a conversation on screen with people she knows but struggles to know how to build a friendship, and worries about not knowing what to say to people" - This is me exactly!!! One of the things that I spent a long while grappling with was after J was diagnosed, it was like a penny dropping as I realised that I too must be on the autistic spectrum. As I was learning about ASD and how it was affecting him - so much of it applied to my life too and my past. At my age now, I can't really see a benefit in "knowing for sure" as I'd rather NHS resources are spent on the kids that need it and speeding up their diagnoses etc. But I'm pretty sure I am on the spectrum and will far more readily tell people that nowadays as I think it helps them to understand why I sometimes put my foot in it with what I say and my social awkwardness. As always, thank you for continuing to raise awareness and helping to make the world a better place for children with ASD (and adults too!) xxx

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    1. Ah thanks for your kind words! And you're definitely not alone with these thoughts x

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