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Autism: the hidden adult condition

Is your anxiety something more?

Exclusive | 4 min read

Do you find it difficult to make friends, feel anxious in social situations, prefer to be alone and struggle to express yourself? Are you hypersensitive to sounds, smells, and irritants, comfortable with routine but anxious if it changes, perhaps don’t like being touched? If you also suffer from stress, anxiety or depression then you could be one of the many undiagnosed adults who are autistic.

Man holding his head. Photo: Wei Ding/Unsplash

Autism is a lifelong, developmental condition that affects how a person communicates and relates to others and generally sees, hears and feels the world in a different way to others.

Now, an increasing number of adults who’ve spent their lives wondering why they feel different from those around them are finding meaning and relief in a ‘late’ autism diagnosis.

But while more and more adults are being recognised as having autism-related conditions and finally getting the help they need, it could be that many more are remaining undiagnosed.


More than 1 in 100 people in the UK are autistic


Under-diagnosis

It was a condition hardly recognised until the 1980s when it was first classified as a mental disorder. Asperger’s Syndrome, a form of autism, was not recognised in diagnostic manuals until the 1990s, leaving many thousands of children struggling to navigate their way through life without a diagnosis. Many of those children from the '60s, '70s and beyond, grew into autistic adults who've perhaps always felt misunderstood.

Seven people sitting on dock. Photo: Duy Pham/ Unsplash

Today, people in their 30s, 40s, 50s, and 60s are being diagnosed as being on the autism spectrum, and it often happens when they hit a crisis in their lives and find a doctor or therapist who has some incidental knowledge of the condition.

Perhaps most famously, the television presenter and naturalist Chris Packham was diagnosed as autistic in his 40s, after seeking therapy because he felt suicidal following the death of his dog.

During counselling, his therapist suggested that he might be autistic. Chris, now an ambassador for the National Autistic Society, was diagnosed with Asperger’s Syndrome.


REAL LIFE: ‘I was diagnosed at 38’

Gosia Batram is a reporter from Devon

Gosia. Photo: Gosia Batram/Lacuna Voices

Gosia was diagnosed with Autistic Spectrum Disorder last year at the age of 38. She’d struggled with anxiety, social interactions, and mental health challenges for years, but for a long time, she managed to ‘mask’ her autistic traits in order to meet society's expectations.

In 2018, her anxiety levels peaked so she sought help. She attended a group workshop for anxiety but immediately felt overwhelmed.

‘I scared the crap out of the staff,’ she says. ‘I was so stressed, I was shaking and it looked like a fit. The room was tiny, with 20 participants, literally sitting with knees and elbows touching. That was too much. I wasn't comfortable in a group setting. I'm fine with one-to-one contact but it needs to be prepared and structured.

‘I know my anxiety will never completely disappear but I'm trying to manage it.’

The experience in the workshop made her eligible for one-to-one therapy, and then more advanced treatment.

‘It was my GP that first suggested I may be autistic,’ she continues. ‘He gave me a book about Asperger's to read. I didn't pursue it initially, but after post-natal depression in 2016 and my mum passing away suddenly in 2018, my mental health deteriorated. I had a breakdown in December 2018 and the crisis team referred me for an assessment.’

Gosia at her graduation. Photo: Gosia Batram/Lacuna Voices

A lot of autistic people have trouble finding or keeping work, with only 16 per cent in full-time employment, but Gosia hasn't let her anxiety stop her from achieving things in life.

‘I've worked all my life,’ she says, ‘including customer service, but I struggle with social interactions and anxiety, so if I don't respond as people expect, they just assume it's because I'm rude or foreign.

‘I've always had bad luck with jobs but following the diagnosis, I now understand that it was both sides not able to understand each other. I also understand better my own strengths and limitations. So rather than trying to fit into the roles I always found uncomfortable, I understand now that I have to use my differences as a guide to finding a type of employment that will suit me better and, therefore be sustainable.

‘As for my private life, I can understand my son better (he was diagnosed with autism) and use my own experience to ensure he is getting the right support for his needs.’

Boys and girls 

It's thought that there are high levels of under-diagnosis, especially among girls, partly due to lack of recognition of autism, and partly because people who are moderate on the spectrum learn to hide it effectively, by the sheer effort of trying to fit in.

Research published by Stanford University School of Medicine in 2015 reported that girls with autism are less likely to demonstrate repetitive and restrictive behaviour than boys.

Julia Bascom, from the Autistic Self-Advocacy Network, says autistic girls may also try harder to be socially accepted than their male counterparts, but they can end up ‘isolated and mistreated’ if they're not diagnosed or supported. This can lead to anxiety, depression, and mental health problems, such as eating disorders or OCD.

While boys might act out their frustrations, such as through visible upset or aggression, girls are more likely to internalise their problems and sink into depression. Girls are also often more adept at hiding their autistic traits.

Accessing an assessment

Many people who are diagnosed as adults find a sense of relief, but getting the assessment isn't always easy. Due to increased awareness, demand for autism assessments has never been higher. Waiting times doubled between 2017 and 2019, with people in some parts of the UK having to wait two years for an assessment. However, other areas are able to offer an assessment in as little as two weeks.

Gosia has some advice if you think you might be on the Autistic Spectrum. ‘You can follow the NHS advice online, or the National Autistic Society website, which tells you how to broach the subject with your GP. Or try one of the online quizzes that helps you self-diagnose,’ she says.

*Visit The National Autistic Society's website for more information and support

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