What does a diagnosis of autism later in life mean?

TV presenter Melanie Sykes is set to publish an “honest” book discussing the challenges she’s faced since her autism diagnosis, which she received at the age of 51 in late 2021.

The presenter, known for shows like Let’s Do Lunch with Gino D’Acampo, said of the diagnosis: “Finally, so many things made sense”.

But the journey wasn’t easy one, and Sykes, aims to explore it in her book - Illuminated: Autism And All The Things I’ve Left Unsaid - due to be published in April.

So, what does a diagnosis of autism later in life mean, and how do you go about getting one if you think you might be affected?

How diagnosis works

“Getting an autism diagnosis involves a detailed assessment with a team of specialist health professionals,” says Dr Sarah Lister Brook, clinical director at the National Autistic Society (autism.org.uk). “Some diagnostic teams accept self-referrals, but in most areas, you will need a referral from your GP.”

The process can be different from that of assessing and diagnosing children. However, it isn’t uncommon for autism to sometimes go undiagnosed until later in life.

Dr Eleanor Brewster, consultant in psychiatry of learning disabilities for Cygnet Health Care (cygnethealth.co.uk), says: “Adults questioning whether to pursue an autism diagnosis has become more common, as there has been more public awareness of the ways that autism impacts people, and so more people are asking whether they may be autistic.”

What are the signs of undiagnosed autism in adults?

The signs can vary greatly because “autism is a spectrum condition and affects people in different ways,” says Lister Brook. However, there are some common themes - such as difficulty with communication and language, anxiety, highly focused hobbies and interests, and repetitive behaviour.

“Autistic people may have difficulties interpreting verbal and non-verbal language, like gestures or tone of voice. Some are unable to speak or have limited speech, while others have very good language skills but struggle to understand sarcasm,” says Lister Brook.

Brewster adds: “Signs of autism can include finding it hard to understand the thoughts or feelings of others, finding it hard to explain your own feelings, facing anxiety around social situations, having difficulty making friends, and being unintentionally rude.

“An autistic person might feel the need to stick to a rigid routine, or might find it hard to understand some subtleties of language - for example taking sayings literally, or not understanding sarcasm. They might find it hard to make eye contact with others,” Brewster continues. “Autistic people may experience over or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain.”

Many autistic people experience anxiety, which can be debilitating: “Anxiety is a difficulty for many autistic adults, particularly in social situations or when facing change or uncertainty. When everything becomes too much for an autistic person, they can withdraw and sometimes go into a meltdown or shutdown.”

Autism and women

Gender plays a huge role in how autism presents and diagnosis.

“Historically, it was thought there were significantly more autistic men than women, but recent research estimates a ratio of one autistic woman for every three autistic men. Women and girls may be more likely to ‘mask’ what we traditionally think of as signs of autism, which can mean it’s harder to identify the challenges they are facing,” Lister Brook explains.

“Masking can also be exhausting and lead to incredible levels of stress,” she adds.

Why is getting diagnosed helpful?

Lister Brook says: “An autism diagnosis can be life-changing and is vital to getting the right help and support at school, home and work. Many autistic adults find a diagnosis in later life explains things about themselves and how they’ve experienced the world,” she explains.

Having a diagnosis means they may be able to access appropriate support. This can take many forms - “from community support and housing to benefits, education and employment”.