Television presenter Melanie Sykes this week revealed the ‘life-changing, or rather life-affirming’ news that she’d been diagnosed with autism at the age of 51.
This was an enormous relief. She said: ‘I now have a deeper understanding of myself, my life and the things I’ve endured.’
But 51 is an inordinately late age for a diagnosis of such a serious condition. Indeed, Melanie’s case is almost certainly an indication of something researchers have long suspected — women and girls aren’t diagnosed as often or early as men and boys because their autism symptoms are different, under-researched and easier to ignore.
Victoria Sweetmore, a mental health nurse, was 38 when she received the shocking news. Her doctors told her she’d lived with autism for most of her adult life. After more than ten years working in mental health, Victoria had spent lots of time with youngsters with autism — yet it never dawned on her that it might be the cause of her own emotional problems.
According to experts, thousands of undiagnosed cases of autism exist in women. Pictured: Melanie Sykes (TV presenter) was diagnosed at 51 with autism.
‘Since childhood I always knew there was something different about me,’ says Victoria, now 39, who lives in Chesterfield, Derbyshire, with husband Matthew, 35, and their three children.
‘I often felt that whatever others had which allowed them to live and function normally, have friendships and enjoy social occasions such as parties, I didn’t. But it never occurred to me that I might be autistic.’
At the age of 16, she was prescribed antidepressants by her GP, but there then followed years of drinking and self-harm as she battled with feeling as though she didn’t fit in. She would struggle with anxiety and depression for more than 20 years before the cause of her problems was revealed — autism.
The tragedy of Victoria’s case, and the extraordinary delay in Melanie’s diagnosis, may well be replicated across the UK.
Experts now think that undiagnosed autism affects thousands of middle-aged and older women. Other factors have often been blamed for the mental disorders.
‘I’m not the slightest bit surprised at Victoria’s story — in fact, it’s a very familiar tale,’ says Will Mandy, a professor of neurodevelopmental conditions at University College London, who studies ‘hidden’ autism in females.
‘There’s a long history of under-diagnosis of autism in girls and women who then go on to develop secondary mental health problems, such as anxiety, depression, eating disorders and personality disorders.’
At present, the overwhelming majority of cases of autism are detected in infancy and in boys —by a ratio of five to one.
Will Mandy, a professor of neurodevelopmental conditions at UCL, said girls with autism are more likely to be anxious than have behavioural problems. Pictured: Melanie Sykes
Autism is a ‘lifelong developmental disability’ that affects around 700,000 children and adults in the UK, according to the National Autistic Society.
You may experience difficulties understanding facial expressions and gestures.
While some sufferers cannot speak, others may be able to understand sarcasm and can take what is said literally. An inability to tune into others’ emotions can make autistic people appear insensitive and much happier in their own company than in that of others.
Autism is most common in boys, where it manifests as a behavioral problem and can sometimes lead to screaming, shouting and other violent behavior. However, autism in girls can be quieter and present as anxiety.
‘Girls with autism are more likely to be anxious than have behavioural problems,’ says Professor Mandy.
The sad fact is, since this doesn’t cause problems to others, and diagnosis relies on someone raising concerns about a youngster’s behaviour, they’re more likely to be ignored.
Jolanta Lacosta, of the charity Ambitious About Autism, adds: ‘Autism in females is not well understood, and is often either misdiagnosed or just not diagnosed at all. If a girl is withdrawn due to undiagnosed autism, there’s an automatic assumption that she must be depressed or anxious rather than have autism.
The Journal of Autism and Developmental Disorders published a 2020 study that found autistic girls do better in hiding their difficulties (file image).
‘Young women often tell us they reach a crisis point. These women grow up with feelings of being different and not being accepted. That can cause mental health problems. Autism is still thought of as a male condition and we need to tackle this outdated stereotype.’
A 2020 study in the Journal of Autism and Developmental Disorders found autistic girls are better at disguising their problems — which experts call ‘camouflaging’.
This study examined how autistic girls and boys interact with their non-autistic peers. The results showed that girls scored much better than boys in taking turns, sharing chores, and being reciprocal.
It’s yet another reason for much more time and research to be devoted to the sometimes subtler symptoms of autism in girls.
‘There seem to be a lot of autistic females flying under the radar,’ said researcher Dr Henry Wood-Downie, of Southampton University, who carried out the study. ‘We need to raise awareness of camouflaging among school staff and GPs as early intervention is key in promoting positive outcomes.’
Experts believe it is possible to intervene early to help these girls and save them from a lifetime of battling a condition they don’t know they have.
Professor Mandy’s research suggests 20 per cent of women attending UK clinics for severe eating disorders have undiagnosed autism (file image)
There is no cure for autism. However, there is therapy that can help children manage behaviour and improve their speech skills.
Missing a diagnosis can result in them failing. Experts warn that some cases can prove fatal for women as well as girls if there is not prompt intervention. Professor Mandy’s research suggests 20 per cent of women attending UK clinics for severe eating disorders have undiagnosed autism.
For Victoria — and Melanie — the diagnosis has come much later than it should have. Victoria struggled with anxiety and depression throughout her years as a mother of a young family.
It was her research that ultimately helped her. Looking online for explanations, she noticed the overlap of her symptoms with those seen in autism and, after several assessments with her GP, a psychologist and an autism assessor, the experts concluded ‘there was no doubt’ she was autistic.
‘It was like receiving a “not guilty” verdict — for the first time it felt like none of it was my fault,’ she says. ‘Best of all, it gave me permission to stop trying to change myself. Now I feel much more in control and I’m not afraid to admit there are things such as socialising that I find difficult because of autism.’
She felt relief, just like Melanie. What a surprise, it took her years to find relief.