Late autism diagnosis for women. How thousands have slipped through the net

Women late diagnosis autism article on Silver Magazine www.silvermagazine.co.uk

Autism has – until quite recently – been seen as something of a male condition, with an average diagnostic ratio of around 4:1 boys to girls.

But now late autism diagnosis is offering women revelation, and a freedom to accept themselves as never before.

…girls are good at masking. Which means they have a greater ability to act ‘normal’.

This isn’t a ‘bash the guys’ article, let’s just kick off with that. The imbalance of boys being diagnosed and girls not has risen largely because girls are good at masking. Which means they have a greater ability to act ‘normal’. And so for generations, autism has been widely regarded as a male condition. Girls are just better actors, and often pressured to behave better. Boys will be boys? Apparently girls have to be quite a lot of other things besides just being themselves.

There are other theories too – including the hypothesis that more males than females just really are autistic. But the phenotype, the behavioural traits associated with autism we have come to recognise and classify by, have been historically built around male behaviours.

And so girls have slipped through the net. They’re often labelled shy, or anxious, or withdrawn. Maybe they’re troublemakers, rebelling against discipline. Actually, maybe they’re just autistic. Boys will often get spotted at young ages, like two years old. Girls, maybe their teens. Maybe their forties. Maybe only when their own kids are being diagnosed.

Why don’t they get spotted earlier?

Apart from the masking, childhood tests are often skewed towards boys’ understanding. For an autistic girl, a question like ‘Do you like to play with just the wheels of a toy car, rather than the whole car?’ is likely to elicit a literal no, because she doesn’t play with cars. The question is about hyperfixation, not cars, but an autist can often find subtext or nuance impossible to process. So she will fail to see the root of the question. You see what can happen?

That’s a very simplistic example, purely for illustrative purposes. But you get the idea.

One thing that has become increasingly obvious with recent research, is that no two autists are the same. And it’s not a case of ‘more’ or ‘less’ autistic. It’s a spectrum, a circle, with different points on it. There are similarities, and commonly shared behaviours. But it’s not linear, and there are no pigeonholes. Neurodiversity is just that. Diverse.

So with girls more able to mask, or often dismissed as emotional, hormonal, hysterical, shy, weird, and so on, it’s not unusual for the diagnosis to only surface decades later.

Girls masking autism traits article Silver Magazine www.silvermagazine.co.uk

I spoke to two late-diagnosis women about their own experiences.

SUSIE’S STORY

What are your specific diagnoses?

Autism Spectrum Condition (ASC) and Asperger’s.

What age were you diagnosed?

I was 50. I’d always known I was different, but just thought I was a bit of an oddball. Then as knowledge around neurodiversity started to grow, I started to read and research, and it was like a light came on. I talked to my doctor, who was amazingly supportive (also female, not sure if that helped) and we started delving.

What did getting a diagnosis mean to you?

The relief was profound. I mean, I’ve upset people, I have struggled to fit in, I don’t recognise people – there’s a long list of things that really affected my socialisation. School was an absolutely miserable experience, largely. I tried to go in as little as possible. And growing up I was in trouble a lot, for failing to respond to discipline or routine. And to understand that there was a good reason for it all was enormous. It was hugely emotional actually.

Can you briefly outline what describes your own experience of being autistic?

I think one of the big things that I became really aware of once I was a business owner was my inability to see faces. I had to train myself to look for prompts – like certain glasses or facial hair, notable eyebrows, that sort of thing. Once I know someone or have seen a face a lot I can recognise it. I also blurt things out a lot. I know instantly I’ve said something inappropriate but by then it’s too late. I’ve spent a lot of my life trying to dig myself out of having inadvertently offended someone – now I just tell them I’m autistic. Being able to explain is magical – for both me AND for the person I’ve upset. They realise it’s not personal or intentional.

My memory is almost entirely visual. Tell me a name or a number verbally, and I’ll forget it. But if I see it written down or I dial it, I can remember it forever. I physically describe the sequence of numbers in the air with my finger if I’ve only seen the number dialled, not written. But it’s in there.

Have you found a fix for some things?

Noises, and bright lights and stuff like that quite hard – supermarkets are tough. So I get deliveries. I used to go out dancing a lot and found that MDMA really helped with that. I believe there are trials now using MDMA for stuff like PTSD. It certainly changed life for me.

I fidget my feet and shake my hands when I’m nervous. And I love patterns, I have OCD although it’s mild, I can’t bear dirty hands and I have to really watch that doesn’t get ridiculous. I hyperfixate on things – bands or musicians usually – and I watch the same programmes on TV over and over again. It makes me feel safe. There’s loads more but that’s a fair glimpse.

What do you think your life might have looked like with an earlier diagnosis?

That’s really hard to answer, because honestly I’ve ended up doing what I wanted, pretty much always. Despite my neurodiversity I seem to have an ability to just drop into the right places and grab the opportunities. Perhaps not ‘despite’ but ‘because of’. School would have been less hellish I think. That would have been nice.

Why do you think it took so long?

Apart from when I was at school and just labelled a trouble maker, I’ve mostly been able to mask really successfully. I just thought I was selfish and thoughtless and hurtful, mostly. In fact have been told that by so many people. So I just thought I was a bit defective and perhaps not a very nice person underneath! I don’t know. I got there when I got there. It’s good to know, even at this stage of my life.

Things not to say to someone autistic…

‘Wow does that mean you’re really good at maths?’ No, I’m really shit at maths. But I do have an obsession with linguistics and I could read entire books aged three. That freaked them out when I got to prep school. I also see music in colours and patterns – which is called synesthesia – a word which has its basis in Greek. Don’t get me started!

Also ‘you don’t seem autistic. My cousin has an autistic six-year-old boy and you’re nothing like him’. Ugh. Where to start with this? I never know what to say to that. I usually just stare at them because I can’t think of anything to say that isn’t blunt or rude. I’m not a six-year-old boy, for a start.

How can neurotypical people better support autists without being patronising or dismissive or ableist or whatever?

Just go with the flow? This is hard – I don’t want to be made to feel ‘different’ but even the terminology… ‘typical’, ‘diverse’… I’d like to see that change although I doubt it will.

Also be really clear when you’re talking to me. I’m not good at implication and I find it hard to look in your eyes. So don’t hint – be really direct. I might not get what you’re on about otherwise.

Ask questions and be interested, I don’t mind that. Also understand that it’s exhausting trying to fit in to the ‘normal’ world all the time. So if I duck out of things or cancel plans, it’s probably because I’m brain dead on the sofa, not because I don’t like you.

Masking autism is exhausting article Silver Magazine www.silvermagazine.co.uk

ELAINE’S STORY

What are your specific diagnoses?

Autism Spectrum Condition (ASC) and Attention Deficit Hyperactivity Disorder (ADHD), which are viewed by the medical profession as separate conditions, but I’m not sure they are.

What age were you diagnosed?

56

And how did you get there eventually?

I have an online friend in the US who said she’d been diagnosed with ADHD and the meds had really helped her. At the time adults weren’t getting diagnosed in the UK so I had to leave it for ages. When I got the diagnosis I tried the meds, but because of other things – TMJ and migraine – I couldn’t handle the meds.

I tried different ones for nearly a year and at the end of that I asked why they thought I had ADHD and not PTSD, and they agreed to have a session or two with a psychiatrist. Around the middle of the second session the psych started asking me questions I had never heard before; ‘Do you watch the same TV programmes over and over?’, for example. He asked if I minded being screened for autism.

I didn’t really care, I assumed it’d be another thing to cross off the list. But very quickly into the assessment I realised I definitely was. I wrote a quick blog post about it which I share regularly because there’s a link between ADHD, ASC, and CPTSD.

Read Elaine’s blog here

Can you briefly outline what kind of behaviours classify your own experience?

I don’t really know what the difference is between ASC and ADHD so it’s hard to say what is specifically autistic. But I do stuff like eat the same thing over and over again, and can get overwhelmed easily. Then I make poor decisions. I’m terrible at my own life admin, and have serious demand avoidance.

I stopped wearing jewellery because I used to fiddle with it constantly. I thought it was making me more nervous, but I don’t really know. Actually I find it hard to follow TV programmes unless the characters wear the same clothes all the time, or something that gives me a clue as to who they are. Otherwise I have to ‘coast’ a bit and pick up the storyline when things fall into place.

What did getting a diagnosis mean to you?

I didn’t get any sort of aftercare – unless you pay for therapy or something you don’t. What I did get was a vocabulary that has helped me understand why I’m different, and then a way of explaining myself a bit better. Mostly this is to do with not overdoing things. I need a good couple of days to recover from doing a task or seeing people. This has mattered less during the pandemic. But because also I am older now anyway I don’t feel duty bound to explain myself.

What do you think your life might have looked like with an earlier diagnosis?

I think I would have been very lucky not to have been much more bullied, and I wouldn’t have internalised the hatred. If it wasn’t to do with the time I have lived through, say I was born much later, it could have really helped me to make better choices for myself.

Why do you think it took so long?

Girls manifest as teenagers with crushes and eating disorders and stuff that isn’t to do with knowing numbers or the ‘boy’ things, so they get ignored. Also, girls tend to be forced to be social in a way that boys don’t, and lots of girls then make this a ‘special interest’. Autistic women are drawn to psychology.

A lot of women get diagnosed now when their kids do, but I didn’t have kids. If I had, and my kids were autistic, I probably wouldn’t have been diagnosed, because that’s quite a new thing, my kids would have been a while ago.

The next time we seem to get picked up is during menopause, since our coping mechanisms go to shit. Frankly, I should have been diagnosed in my early 40s, but again, it’s all about how things stand now.

Things not to say to someone autistic…

The same things you wouldn’t say to anyone you respected. But a lot – ‘everyone’s a bit on the scale, aren’t they.’ No, they’re not.

How can neurotypical people better support autists without being patronising or dismissive or ableist or whatever?

I don’t really care as such about people being arseholes to me. It tends to be people who don’t know me, so although it burns I can move on (eventually). I hate feeling misunderstood, so something like someone commenting on a social media post I’ve made, say, about a difficult experience I’ve had and they’re dismissive or scornful, it’s hurtful. But I have to remember people don’t know me and they don’t really GAF about me.

If you’d like to know more about autism diagnosis in women and girls visit this National Autistic Society page

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