From Daily Mail, by India Sturgis.
04/07/2023
On a Saturday morning two years ago, Jane McNeice was lying in bed, scrolling through Facebook when a colourful chart describing traits of 'girls with autism' caught her eye. The list included 'practises conversations in mind', 'may feel out of place in the world', 'anxiety', 'perfectionist', 'trusting' and 'adapts behaviour to fit in'.
'I went, tick, tick, tick — and cried my eyes out,' says the 47-year-old author and founder of mental health training company Mind Matters.
'I knew immediately. It was like a light bulb going on over my entire life,' says Jane, who lives in Doncaster with her husband Steven, 33, who runs his own IT company, and their children, Oliver, ten, and Benjamin, seven.
For more than four decades, Jane had experienced a range of problems, including discomfort interacting with others, low self-esteem, anxiety, depression and suicidal thoughts. She has always been, she says, a square peg in a round hole.
At that time, in 2021, she'd been seeking help for Oliver, who since lockdown had been increasingly having meltdowns where he'd lash out, cry and scream.
Jane also has a daughter, Laura, 27, from a previous relationship. From a young age, she had also experienced emotional problems, as well as being verbally abusive and damaging things at home.
What started off as one light bulb turning on became a series of flicked switches for the McNeice family. Over the following seven months, first Jane, then Laura, and finally Oliver, were diagnosed with autism spectrum disorder.
This is a lifelong developmental disorder that affects how people communicate and interact with the world. While the causes are not clear, experts believe that genetic factors may contribute, with studies estimating 40 to 80 per cent have an inherited factor.
Jane and Laura were reluctant to wait for an NHS adult diagnostic service (currently two years or more, depending where you live) so went privately to a psychotherapist who assessed them using tests produced by the American Psychiatric Association.
In Oliver's case, a chat with a GP and his school led to them receiving an NHS letter saying the wrong department had been contacted and suggesting Jane and her husband take a course for parents with children with ADHD (attention deficit hyperactivity disorder) and emotional regulation problems.
After paying for a private assessment, which established that the suspected ADHD was 'unlikely' and autism was 'possible', Jane paid £3,750 for an autism assessment by a specialist child psychiatrist, which included Oliver being observed at school.
Jane says each diagnosis has made a significant difference to their lives. 'Understanding who we are has improved our sense of self, our mental health, self-esteem and resilience,' she says.
It's often assumed that autism affects boys more than girls — and, certainly, boys are more likely to be diagnosed, with a 2017 study published in the American Academy of Child and Adolescent Psychiatry showing three males are diagnosed for every one female.
There are around 700,000 UK adults and children diagnosed with autism, according to the National Autistic Society, with around 460,000 of them men and boys.
However, research published in The Lancet in April suggests the numbers affected could be more than double the official figures, with the over-50s and women less likely to be diagnosed.
One of the main reasons behind this lack of diagnosis is that females are less likely to 'fit the pattern' of autism, defined by research that's largely based on males, suggests Dr Sarah Lister Brook, a clinical director at the National Autistic Society and diagnostic specialist with the charity's Lorna Wing Centre for Autism.
Standardised approaches for assessing autism lean towards questioning and expecting a pattern of behaviour and development that is more typical of males, because, historically, common autistic mannerisms came from studying boys,' she explains. 'Those approaches might miss picking up a more typically female profile.'
For instance, a 2013 study in the Journal of the American Academy of Child and Adolescent Psychiatry added irritability and lethargy to the problems that typically affect autistic girls more than boys. Girls may also 'mask' their symptoms more, by copying how their peers speak and behave.
'It's not the case for all males, but we know the typical male presentation is more overt symptoms such as repetitive patterns of behaviour, rituals and unusual movements in their bodies [such as hand flapping],' says Dr Lister Brook.
'We've found, over many years of assessing women and girls, that while some experience some of these behaviours, they will often suppress them more effectively and have more of a social filter for repetitive behaviours.
'While boys typically act out how they are feeling and externalise their emotions, girls tend to be more internalising.'
Dr Rachel Hiller, a clinical psychologist and research fellow at Bath University, led two studies, published in 2014 and 2015, on autistic gender differences and found that boys and girls with autism behave differently as early as pre-school years. Young girls were more likely to mimic others to fit in, and obsess over friendships; boys were more likely to withdraw and socially isolate.
Autistic women and girls are often more socially motivated than autistic boys or men, and may have close friendships,' adds William Mandy, a clinical psychologist and professor of clinical psychology at University College London.
Differences can also occur with interests or obsessions.
'The special interests of autistic girls often look less striking and unusual than autistic boys,' says Professor Mandy. 'For example, a girl might be fascinated with animals, or make-up, whereas a boy might be really interested in the District Line or 50p pieces.
'Though someone without autism might have these same interests, they won't tend to be followed with the same autistic intensity.'
The understanding about women's experience of autism is slowly improving, says Dr Lister Brook, who has noticed a steady rise in referrals for autism assessments for women and girls. 'The figure has definitely increased rapidly — and more so in the last 15 years.'
But a study in 2015 by online research community Interactive Autism Network (IAN) found that girls in its U.S.-based registry of over 30,000 autistic individuals have milder autistic mannerisms than the boys. IAN's director, Paul Lipkin, said: 'We must consider whether the girls are not only being recognised later, but also may be underidentified due to less pronounced symptoms.'
But this does not mean that their symptoms are any less distressing, says Jane. 'The presumption is that girls with autism do not get diagnosed because maybe we are not suffering or we have our problems under control or managed. That is not true. Our suffering is hidden.'
Another crack autistic females can fall into is being diagnosed with anxiety or other mental health disorders. This is less likely for males whose symptoms tend to be more pronounced.
'It is not uncommon for someone with autism to hit a clinical threshold for anxiety and be diagnosed with it,' says Dr Lister Brook. 'But it takes a bit of curiosity to understand that there might be a neurodevelopmental condition — autism — underpinning it.'
Sarah Dickinson, 34, from County Durham, was diagnosed with autism and ADHD 18 months ago — having previously been told she was suffering with anxiety.
'I was called a hypochondriac and highly sensitive, but I just knew there was more to it,' says Sarah, a customer experience manager for a health food company. 'I'd have awful breakdowns and what I thought were panic attacks at school when I felt extreme emotional or sensory overload.
'I'd have a very big cry and then isolate myself and not speak much for a few days to recharge. Every six months or so I'd visit my GP begging them to do every test possible to find out why I struggled so much with daily life.'
Soon after starting secondary school, Sarah was diagnosed with generalised anxiety disorder and depression and prescribed sertraline, an antidepressant. But this had no effect on her mood, so after nine months she came off it.
'I struggled a lot with change and going into a new environment,' she says. 'I got bullied for copying others — but, if I was myself, asking too many questions or saying 'weird' things, I got bullied for being different. I was stuck.'
Throughout her adolescence, doctors suggested her weight, hormones or the contraceptive pill might be responsible for how she was feeling. 'You start to question yourself — am I making this up? Am I going crazy? If you have low self-esteem anyway, it can be really difficult.'
Sarah went to college to study animation and illustration but left after less than a year because she struggled with the pressure of deadlines, something she now identifies as pathological demand avoidance — a recognised characteristic of some autistic people — which means avoiding everyday demands and expectations to an extreme extent.
During lockdown, her anxiety hit new levels and she was seen by a different GP who reviewed her medical records. 'She said: 'Has anyone ever talked to you about autism or ADHD?' At the time I laughed. It sounded ridiculous.'
A backlog for specialist assessment meant the diagnosis process took two years, but when a psychiatrist finally confirmed it was autism, she, like Jane, said it made a huge difference. 'I know that my 'character flaws' are not flaws at all. I'm just wired differently.'
She is now less concerned about trying to fit in. Connecting with other autistic people, like her, through social media @adhd.khaleesi on Instagram and TikTok) makes her feel happier and less isolated.
With more than four decades of practice, Jane had become adept at 'masking': trying to do or say the socially 'right' thing by copying how others speak, gesture, or even the tone of their voice. 'I would mimic their ideals, how they dressed, even their handwriting,' she says.
It was, she says a blessing, in that it helped her fit in, but it was mentally exhausting. It never occurred to Jane that she might be on the spectrum. 'I'm actually really poor at maths, though I've always been good at pattern spotting,' she says.
Jane, who has self-published a book, The Umbrella Picker, about her diagnosis, says knowing she is autistic has helped her become less self-critical.
Her daughter, Laura's, diagnosis at 26 was equally transformative. 'She is now able to manage her emotional impulses more effectively, through awareness and coping mechanisms, and has an explanation for why she experienced the thoughts and feelings she has.
'To find out your child is autistic and that their suffering can be eased is priceless. For me, too, it's been the best psychological intervention I've ever received for my mental health, even though there's no treatment as such,' says Jane.
'It improved my anxiety levels. I just want all the other lost girls out there to be found.'
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