What it's like to find out you're autistic as an adult

What it's like to find out you're autistic as an adult

Some people with autism aren't diagnosed until adulthood. We speak to Ronnie Pinder who was diagnosed with Asperger's syndrome at the age of 45, about what he wishes everyone knew about autism spectrum disorder (ASD) and the misconceptions he wants you to stop believing.

In the UK the number of people with autism is thought to be around 1 in 100 according to the National Autistic Society (NAS). This may be an underestimation because if the condition is not diagnosed when the person is in full-time education, they may never be diagnosed as an adult.

The NAS says: "Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them."

When someone has autism it doesn't mean they are unintelligent or cannot learn; there are many people with autism who are very clever and have demanding, professional careers. But people with autism do tend to behave and relate to others differently. These differences can be quite subtle in some instances, which is why some people with autism are not diagnosed until adulthood. Some adults have 'slipped through the net' because thirty years ago people were less aware of the condition.

What does it mean to be on the spectrum?

Autism, or autism spectrum disorder (ASD), is a spectrum of conditions. This means that although everyone with ASD is autistic, it affects everyone differently and to a different degree. Some people with ASD find social situations very difficult because they can't read body language and facial expressions easily. This can cause confusion and difficulty in communicating. ASD can also affect sensitivity of the senses, which can be over- or under-sensitive. Everyday noises, smells, light and colours can be a source of stress for anyone with ASD, as well as any change to routine.

Asperger's syndrome

High-functioning autism, where the person is of average or above-average intelligence, can be known as Asperger's syndrome.

This is classed as a type of autism where the difficulties are less severe. Many adults with Asperger's syndrome are employed in professional careers and can be gifted, although colleagues may need to adapt their responses to avoid communication problems.

Diagnosed in adulthood

Ronnie Pinder, from York, was diagnosed three years ago when he was 45.

He explains: "I realise now that I'd had many of the signs of ASD when I was a child. I didn't appreciate I was that different to other people; in fact, I thought everyone felt the same as I did. I was quiet and introverted. I didn't socialise much and the idea of moving away from home and going to university, in a new environment, scared me. I left school and went into a series of menial jobs in retail, married very young and had a family."

How was he diagnosed? "By chance I read something online about autism and realised I seemed to fit the description. There was a link to a questionnaire which I completed. Autism became my special interest; that's another autistic trait - to become immersed in a hobby or interest. I spent two years researching autism and the more I read about it, the more I realised I fitted the profile."

Ronnie decided to seek advice from his doctor. "My GP was very supportive and referred me for specialist assessments with clinical psychologists and psychiatrists. I had to wait nearly two years to be assessed and then the assessment took many months. The result was no surprise: I was autistic."

How does Ronnie feel now? "I look back and regret not going to university and having a better career; I know I would have been capable of getting a degree but at the time very few people like me were being diagnosed or supported in higher education. However, I now combine my work in retail with publicising autism; I give talks all over the country to employers, doctors and schools, to help people understand autism. I have also discovered that my nine-year-old daughter is autistic and my condition means I can help her."

Misconceptions about autism

Ronnie is concerned about the misconceptions around autism. "Most people's knowledge of autism doesn't go beyond the film Rain Man," he explains. Here are a few myths about autism he wants everyone to stop believing:

You can tell by looking at someone whether they are autistic

No, you can't.

Autism only affects boys

No, it is five times more likely in boys but girls can have ASD too.

Autism can be cured

No - people with ASD can often learn how to communicate better, socialise and adapt their behaviour, but it's a lifelong condition.

People with ASD are less intelligent

Many people with ASD have learning difficulties, but ASD is a spectrum and everyone is different.

People with ASD cannot form close relationships

Relationships can be more challenging because people with ASD tend to misread subtle communication signals, but many autistic people have partners and children.

Visit our forums

Head over to Patient's forums to seek support and advice from our friendly community.

Hi allMy daughter is 11. She has selective mutism since basically she’s been able to speak. However after a lot of intervention she has now in the last year started to talk and for the first time to...

Dollar1980
Health Tools

Feeling unwell?

Assess your symptoms online with our free symptom checker.

Start symptom checker
Listen