Getting an autism diagnosis as an adult: Benefits, challenges and where to get support

Autism is a condition which can have a variety of characteristics relating to social communication and interaction, specific behaviour and a need for repetition, routine, and intense focus on specific interests and activities. Getting an autism diagnosis as an adult can come with specific challenges, but may also bring benefits.

What is autism?

Autism may be referred to as a developmental disorder, but the range and extent of traits associated with autism means that it is much more complex than that. The ‘symptoms’ or traits of autism include ways of communicating and understanding social interactions which differ from typical presentations.

A classic sign associated with autism is a tendency to be very literal, for example, to find it difficult to understand metaphors in speech – ‘she was glued to the television’ might mean something very different to someone who takes the phrase literally!

People with autism may share certain traits, but autism is referred to as a spectrum for a reason. One person with autism may be unable to live independently and find it incredibly difficult to live in a world that is not designed for people with a different way of understanding and communication from the usual.

Another person with autism may manage well with few adaptations. Having autism can make the world challenging, but for some, it can be a superpower. We can use the terms ‘neurodivergent’ and ‘neurotypical’ when we talk about autism – someone who is neurodivergent is someone who doesn’t necessarily experience, think, and communicate in the usual ‘neurotypical’ way.

Autism is more widely understood and accepted now than ever before – a combination of sharing experiences globally through social media, peer support, mass education and communication, and initiatives like World Autism Day on April 2.

Characteristics of autism in adults

The classic signs that people associate with autism may present differently in adults than in children. Being diagnosed with autism as an adult very often means that one has learnt strategies for ‘passing’ as neurotypical, hiding natural tendencies so as to get by without attracting negative attention. This means that the very typical signs that might be noticed in school or early years settings are not the kind of signs that one might see in the adult population.

It is also increasingly clear that there are gender differences in expressions of autism. It was previously thought that women were less likely to have autism than men, but this seems to be more that they often have different ways of expressing – or masking – traits of autism. Some of the most typical signs of autism in adults include:

• Needing to stick very rigidly to routine – possibly becoming upset, anxious or angry at unexpected disruption or disturbance to that routine.
• Atypical communication interactions – it could be something as subtle as not matching the usual volume of a conversation, or speaking robotically, lacking the inflection of most neurotypical people’s speech patterns.
• Missing non-verbal cues – including finding it difficult to know how someone is feeling unless they explicitly say it.
• A need for precision – another communication trait, needing extreme precision to feel sure that everyone understands an interaction.
• Being very literal, meaning having to work hard to understand certain turns of phrase, idioms and metaphors.
• Having an extreme interest in just one or two favourite topics, sometimes talking about them at length without really knowing if the other person is interested. This can sometimes mean someone with autism becomes extremely knowledgeable and expert about a certain subject, or very skilled as a specific activity.

The traits of autism vary widely from person to person, and can be very subtle or extremely pronounced. Autism is also quite closely linked with other conditions, including dyspraxia, so people with autism may have been considered ‘clumsy’, particularly as children.

What is high-functioning autism in adults?

For someone with autism to reach adulthood without any formal diagnosis, they are likely to have developed coping mechanisms to help them get by. People may refer to this as ‘high-functioning autism’ – this just means that they have been able to get by alright in a neurotypical world.

Some people with autism need lots of support with their activities of daily living, may live in assisted living facilities and have carers to help with certain aspects of their day-to-day life. Some people have autism alongside other conditions, some of which make it even harder to live independently – epilepsy, sleep disorders, anxiety, depression and other mental and physical health conditions can accompany autism in some people.

[[nid:507951]]

The expression ‘high-functioning autism’ isn’t necessarily helpful – it simply describes someone with autism who is able to appear almost neurotypical, and is something of a throwback to the days when only people with very extreme autistic traits would have been diagnosed.

Some of the traits of autism – for example, the ability to focus on a single activity or interest almost to the exclusion of other interests – can mean that a person with autism can find it very easy to become experts in their field, and people with autism can excel in life. Some of the most well-respected and famous people throughout history are now thought, retrospectively, to have been likely to have had autism, although they may have lived before such a diagnosis was even possible.

Diagnosing autism in adults

In a child with autism, it is likely to be a parent, carer, or member of school faculty who raises concerns about communication or social interaction skills, non-typical behaviour or activities. There are set structures for children to be assessed and supported, usually at school or in specialist settings.

For an adult to get an autism diagnosis, they don’t necessarily have that sort of structure in place; to recognise signs, to ask for assessment and to understand and manage a diagnosis requires someone to be able to self-advocate or to have someone who can advocate strongly and safely for them.

Logistical difficulties may mean that autism in adults is underdiagnosed; there are likely to be a lot more people out there managing autism independently than have been given an official diagnosis.

Autism can be like lots of different conditions in that people only tend to seek diagnosis and support if their condition is difficult to manage or is causing problems.

Someone with autism who is managing well may be aware that they have different ways of experiencing, thinking and communicating than most of the people they meet, but unless it is causing a problem there isn’t necessarily anything to spur someone on to pursue a diagnosis.

It’s important to get support and advice from a professional, as diagnosing autism isn’t always straightforward. A GP can be a good first point of contact and will be able to offer avenues for assessment and support.

The benefits of getting an autism diagnosis

For many, a diagnosis of autism will not come as a shock, but rather will help explain certain challenges and experiences of their life up to that point. The label may have historically negative connotations, but people in general are becoming more aware of autism as a spectrum. In addition, mass media and education mean that in many areas and many respects, tolerance, acceptance, and inclusivity have never been more valued in society than they are now.

Having a diagnosis of autism can help a person understand themselves better, and can also help others to understand them. 

A diagnosis can enable people to use the right kind of language to describe traits and challenges, to advocate for themselves, to manage adjustments and to seek support when experiencing difficulties.

An official diagnosis may also change the level of support that workplaces, colleges or other facilities are required to offer, and sharing a diagnosis with an employer should mean that they can make reasonable adjustments to support workers whose autism means that they can do better with certain changes in the workplace.

ALSO READ: 'I was labelled 'rude' and 'argumentative'… then I found out I'm autistic'

Support for adults with autism in Singapore

World Autism Awareness Day is just one of many initiatives aiming to educate people about autism and to facilitate support, understanding and acceptance.

People who are neurodivergent have access to more support than ever before, and this can take the form of face-to-face groups or activities, local, national, and international organisations, and many online communities.

As autism can have such a broad spectrum of impact, the right environment for one person with autism may not be the same as for another, but there is something out there for everyone living with autism. Education can foster understanding among all people, and specific groups for neurodivergent people can enable those with shared traits and familiar challenges to support each other.

Find out more about the various autism care centres in Singapore here.

This article was first published in Homage.