Why are women only being diagnosed with autism in mid-life?

Why are women only being diagnosed with autism in mid-life as Mel Sykes is told at 51?

  •  Melanie Sykes revealed that she’d been diagnosed with autism at the age of 51
  • ‘Developmental disability’ affects more than 700,000 people in the UK 
  • Experts now believe thousands of women are battling with undiagnosed autism

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.

Her diagnosis came as a huge relief. She said: ‘I now have a deeper understanding of myself, my life and the things I’ve endured.’

Yet 51 is clearly very late in life to be diagnosed with such a significant 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.

At the age of 38, mental health nurse Victoria Sweetmore was given the same startling news. Doctors told her that, for almost all her life, she too had been living with autism. 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.

Experts now believe thousands of women are battling through life with undiagnosed autism. Pictured: TV presenter Melanie Sykes who was diagnosed with autism at the age of 51

‘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.

Some experts now believe that thousands of women, many middle-aged or older, are battling through life with undiagnosed autism. Their mental health problems have wrongly been blamed on other things.

‘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.

It can manifest itself in a variety of ways including difficulties in interpreting gestures, facial expressions or tone of voice.

Some sufferers are unable to speak at all, while others have excellent language skills but may fail to grasp sarcasm, and take everything 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.

While autism is more likely to manifest in boys as a behavioural problem, and sometimes in meltdowns characterised by screaming and shouting, in girls it can show up in much quieter ways, and often as anxiety, instead.

‘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.

A 2020 study in the Journal of Autism and Developmental Disorders found autistic girls are better at disguising their problems (file image)

‘Young women often tell us they reach a crisis point. They grow up feeling different, not fitting in and not knowing why. And that leads to 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’.

The study looked at how autistic boys and girls interact with non-autistic peers, and the results revealed that while autistic boys scored poorly in terms of taking turns, sharing tasks and reciprocal behaviour, in girls there was hardly any difference.

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)

While there is no drug to treat autism, children can benefit enormously from therapy to control behaviour and improve speech and language skills.

A missed diagnosis simply fails them. Indeed, without prompt intervention, the consequences for some girls and women can be catastrophic, say experts. 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. The years in which Victoria raised a family while holding down a busy job in the NHS were plagued by bouts of depression and anxiety.

In the end, it was her own research that helped her most. 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.’

Like Melanie, she felt only relief. But what a scandal that it had taken years of angst to get there.

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