Recognising and Supporting Autism in Adults

Although autism spectrum disorder (ASD) is commonly associated with children, an increasing number of adults are being diagnosed with autism. This is in part due to increased awareness, with more people reaching out for support, as well as better diagnostic services.

Employment rates for adults with autism are significantly lower than their peers, with it estimated that only 30% of autistic people are in paid work. Around half of these are only in part-time work.

Autism exists on a complicated spectrum and despite some autistic people needing substantial help with daily tasks, with some understanding, support and the right changes, many more autistic adults could be welcomed into the workplace.

Understanding Autism Across the Lifespan

Autism is a developmental condition, rather than a mental health disorder, although some people experience it in addition to another cognitive issue such as attention deficit hyperactivity disorder (ADHD). Autism exists on a spectrum, meaning that it is not something that all people will experience in the same way. Autism is sometimes referred to as high functioning or low functioning. It is further described by some people as ‘neurodivergence’.

People with high functioning autism have lower support needs and do not experience an intellectual disability. Low functioning autism causes more obvious symptoms and people diagnosed with it usually require a significant amount of support in day-to-day tasks. Many individuals show traits that exist somewhere between the two and do not fit neatly into either category.

Autism is not something that you grow out of, although with support and therapy, many people find ways to manage and even ‘mask’ their autism as they get older.

While autism awareness has increased significantly in recent years, a significant gap remains in recognising and supporting adults with autism spectrum disorder (ASD). Unlike children, adults with ASD often go unnoticed due to their developed coping mechanisms, leading to delayed diagnosis and inadequate support.

Recognising Autism in Adulthood

Common signs and characteristics

Some of the common signs of autism in adults include:

• Having a hard time understanding how people are feeling or thinking
• Disliking or being anxious in social situations
• Difficulty making and maintaining friendships
• Preferring your own company
• Problems articulating your feelings and emotions
• Taking things literally, misunderstanding sarcasm or hyperbole
• Craving routine and struggling with last minute changes

Additionally, people with autism may struggle with social cues and say and do things that may seem inappropriate to others, struggle with eye contact and dislike being touched or having people too near them. Some autistic people have sensory issues, which we will discuss in more detail later.

It is important to note that many members of the population may identify with some of the above characteristics. This does not mean you have autism. Autism also exists on a complex spectrum with some people identifying with some of the characteristics but showing no sign of others, or showing signs that appear ‘mild’.

If you feel like you may be autistic and would benefit from a diagnosis you can make an appointment to speak to your GP. Getting a diagnosis can be a long and arduous process, with access to mental health services differing between regions and waiting lists at record highs.

To stand the best chance of your GP making you the right referrals, autism charities highlight the importance of being as clear and direct as possible at your appointment. It may help to write down some notes about what you want to talk about to avoid getting distracted. In particular, you will want to outline any issues that you have with:

• Communication (including people saying you come across as blunt or even rude)
• Socialising or making friends
• Sensory issues
• Need for routine and responding poorly to last minute changes
• Any problems you have had at work or school
• Whether you have previously been diagnosed with a learning difficulty or any mental health condition

In England, GPs should be following NICE Guidelines 142 and implementing the statutory guidance. If they suspect there are grounds for referral, you will be referred to a diagnostic team that are able to assess you for autism.

If you can afford to, you may also have the option of getting a private diagnosis in your area which may cost upwards of £2,000. However, be aware that to access certain benefits and services, you may also need an NHS diagnosis as well.

Late diagnosis

For adults, an autism diagnosis can help them to make sense of things that may have always seemed slightly ‘off’ and understanding why they feel or act different to others. Many people find a diagnosis a relief, although it is important not to let a diagnosis become a label that defines a person.

A late diagnosis may help support adults with autism in various ways, such as:

• Helping them to understand their identity and why they struggle with some aspects of life more than other people appear to
• Allowing adults to request the correct support at college, university or in the workplace
• Giving people access to financial benefits from the Department for Work and Pensions (DWP)
• Giving them a way to explain to others why they may have a different perspective and approach to life
• Correcting a previous misdiagnosis of a different mental health condition

There are various diagnostic tools available to clinicians and multidisciplinary teams who are responsible for diagnosing autism. There is no set criteria or list of questions that you will be asked.

It may take time to come to terms with the results of your diagnosis, whether you are diagnosed as autistic or not. You may have a lot of questions to ask; some services offer follow-up appointments to provide further support. There is also a wealth of information online.

Self-identification

Some people may self-identify as autistic to give them a better understanding of who they are and how to develop strategies and coping mechanisms that will help to mitigate some of the problems they come across due to their different way of thinking.

Autism may be less apparent in the adult female population as autistic females are more likely to effectively use ‘social masking’ to cover their autistic traits. Often women learn to hide their autistic behaviours to better ‘fit in’ with with neurotypical adults.

Challenges Faced by Autistic Adults

Social and communication difficulties

People with autism may struggle to see and understand certain social cues. At times, this can lead to offence and misunderstandings. Increased awareness around the subject of ASD will hopefully lead to increased empathy and understanding.

It can sometimes be more difficult to make friends or start romantic relationships if you have autism. If you are struggling with social interaction and would feel more comfortable meeting up with other autistic people who share your experience, you can find some groups listed on the National Autistic Society website. You can also search online for group meet-ups, organised walks and even speed-dating events!

Many autistic people thrive on routine. If you want to get out and meet people, consider learning a new skill or taking up a new hobby. This can be a more structured way to get out and socialise with less pressure, as the focus is not specifically on making friends.

If you are a parent with autism, you may feel uncomfortable interacting with other parents at children’s parties or overwhelmed amidst the chaos of school pick-up. There may be a group for autistic parents in your local area where you can meet with other people who may share your perspectives. Additionally, try speaking to the school about:

• Dropping off or collecting your child five minutes earlier when it is quieter
• Doing parents’ evening via a phone call rather than face to face
• Any other changes that the school can make so that you, and other autistic parents, feel more included.

If you feel comfortable disclosing your autism, sometimes this may be all it takes for people to adjust their behaviour or make changes to a situation so that you feel more comfortable. This is not always the case and that is why increasing awareness and advocacy around neurodivergence is so important.

Sensory sensitivities

It is common for people with ASD to have one or several sensory sensitivities. They:

• Do not like to be touched (especially by strangers or if it is unexpected)
• Hate crowds or having people standing too close to them
• Suffer from ‘sensory overload’ (this is when sensory stimuli become overwhelming)
• Have strong reactions to certain fabrics, foods, scents or sounds

If a person is experiencing issues with overload or sensory processing they may appear to completely shut down. Others may react by covering their ears or eyes or displaying other physical signs that they are struggling. Overload can be triggered by a single event or can also be the result of long-term masking or a build-up of tension after trying to cope with sensory sensitivities over time.

If you are not diagnosed with autism until adulthood, it is likely that you have found ways to cope with the sensory sensitivities that have been with you since childhood. However, you may still benefit from getting support which may come in the form of:

• Occupational therapy
• Cognitive behavioural therapy
• Support with food and eating habits

You are also entitled to reasonable adjustments to be made for you at work if sensory processing issues are affecting you there.

Mental health

Unfortunately, people with autism are more likely to experience mental health issues than the general population. These include anxiety and depression. Research by the charity Autistica found that up to seven in ten autistic people may experience a mental health problem.

Anxiety and social anxiety often act as a barrier for autistic adults to getting out and socialising. Having anxiety can significantly impact a person’s way of life and it is important to try to find some coping mechanisms that mitigate the effect it has on your life.

If you are struggling with anxiety or depression, you may find counselling, therapy or medication helpful and should reach out to your GP to be matched to the appropriate treatment.

Support and Accommodation

Employment

Under the Equality Act 2010, it is against the law to discriminate against someone at work for being autistic. Employers are also expected to make reasonable adjustments to support disabled employees, which includes people with autism, ADHD or learning difficulties.

Many autistic workers have a lot to offer and most inclusive and decent employers will be willing to make reasonable changes to make their employees feel welcome, such as:

• Offering flexible working or remote working
• Promoting a culture of inclusivity and diversity
• Showing an understanding of the Equality Act
• Involving all staff in decision-making (to mitigate some people feeling left out or that disabled workers get ‘special treatment’)
• Making environmental changes (such as adjusting lighting or sound levels) to accommodate autistic workers
• Trying not to disrupt an autistic worker’s routine with last minute changes (staying organised and having rotas ready ahead of time)

Simple, small changes may help autistic adults to feel valued and included at work.

Social inclusion

Some autistic people feel socially isolated. This may be because they struggle with busy, social situations or are worried about being judged by others. To try to reduce this, autism friendly environments are being created in some public spaces. These environments aim to minimise sensory overload, anxiety and stress, while promoting understanding, acceptance and social interaction.

As awareness increases, an increasing number of businesses are adopting these practices, for example:

• Film showings at cinemas where the lights stay on and it doesn’t get fully dark
• Autism friendly theatre (sometimes called ‘relaxed performances’)
• Quiet times (usually early in the day) at supermarkets where there is no music on and fewer customers

The key to making these kinds of changes useful is to make them inclusive for all; encouraging only autistic people into public spaces may be counterproductive and can lead to further marginalisation. This is where advertising and careful wording is important, as well as spreading awareness – autism friendly means that adaptations have been made to make something more suitable for someone who is autistic, not that it is only suitable for someone with autism.

It is important for diverse groups of people to feel that they can safely interact and coexist; this is the main goal of social inclusion.

Access to services

NHS waiting lists can be a barrier to accessing mental health services across the board. However, charities and grass roots support groups also exist to support people with autism to get the help they need. Some adults who have been diagnosed with autism who may struggle with social interaction, may find online support groups and forums helpful.

The Autism Act 2009 states that the government has to have a strategy for improving services offered to autistic adults in England. One aim of the Act was to make it easier for adults to access diagnostic services in their local area. Additionally, once you have an autism diagnosis, you should be entitled to help from your local social services. They should be able to advise about housing, finance and any other support you need.

Advocacy and Self-Advocacy

Awareness around autism is growing; however, it is sometimes necessary to remind people, such as employers or teachers, of:

• How autism affects you
• Whether you require support
• What they can do to help

Increasing awareness about adult autism can also help to reduce the stigma and isolation that some people feel as a result of being different. As we know, good mental health outcomes are lower for people who are autistic, so it is important that people work together to find solutions and promote diversity and inclusivity.

Being an advocate for autism can:

• Dispel myths about ASD
• Help autistic people to integrate, socialise and have a sense of belonging
• Spread awareness about how autism affects people
• Stop the perpetuation of misinformation and stereotypes
• Increase social cohesion between adults on the autism spectrum and those who are not
• Help businesses to make simple changes to offer a more inclusive environment

Conclusion

It is important to recognise that autism is not just a childhood issue. The National Institute for Health and Care Excellence (NICE) estimates that the prevalence of autism in adults is around 1.1% and with improvements in diagnostics this number is likely to increase in the future.

It is important to recognise and support adults with autism to help them to gain equal access to services, employment and independence. It is also important to reduce the stigma, labelling and ignorance that some people still have towards people who may present as different from the norm.