Understanding late diagnosis of neurodivergence: experiences, emotions and support

It’s estimated that up to one-in-seven people around the world are neurodivergent – this includes people with ADHD, autism, dyslexia, dyspraxia, dyscalculia and Tourette’s syndrome, among other conditions. ^{Footnote [1]} Obviously, experiences vary but many have found ways to thrive with the right understanding and support.

This has been helped by a growing awareness of neurodiversity. Parents are increasingly seeking a diagnosis for their children to get them the help they need with their education, for example. But what if you’re an adult and have wondered if you might be one of the 20% who would not be considered neurotypical – what are the options?

Perhaps you look back on your school days and remember finding it hard to focus and concentrate? Perhaps teachers portrayed you as a ‘daydreamer’ and you felt misunderstood?

All too often, adults with neuro-developmental conditions have grown up feeling that they don’t ‘fit in’ with the mainstream or that they are ‘different’ in some way. Without greater understanding, community adjustments and the appropriate support, neurodivergent people sometimes risk social isolation alongside challenges at school and in employment.

This will be familiar territory for many adults as our understanding of ‘neurodiversity’ is still developing. Schools have taken time to catch up and it’s fair to say that some still struggle to provide support where it’s needed. As awareness has increased many people have been helped, but some have slipped through the net.

Because awareness of neurodiversity isn’t yet as widespread as we’d like, it’s very possible that as you’ve entered the world of work, you’ve not had the support you need and you’re one of the many who has exhausted themselves by ‘masking’ – the constant struggle to present as neurotypical. 

What is masking?

• Forcing yourself to make eye contact with people, even if it makes you feel uncomfortable.
• Keeping track of your facial expressions, perhaps by mirroring others’, when it doesn’t come naturally.
• Suppressing, reducing or hiding stimming (repeated movements or behaviours).
• Toning down your reactions if you are sensitive to touch or noise.
• Rehearsing conversations in advance about what you want to say to someone (‘scripting’).
• Not sharing your interests for fear of a negative reaction.

There are many reasons why people decide to be assessed as an adult. A diagnosis of a neurodivergent condition such as autism or ADHD might explain why you find certain things or situations challenging or why you see the world in a certain way. It could bring validation, relief and comfort.

For some, having been labelled ‘lazy’ or ‘naughty’ at school, the knowledge that their behaviour was driven by autism or ADHD, can lead to improved self-esteem. In addition, a diagnosis can open the door to getting support at work and potentially financial support from the government.

It can be a big step though. There can be long waiting lists for an assessment on the NHS, while private tests can be expensive. If you do choose to have an assessment, NHS advice is to make an appointment with your GP, where you will be asked about your symptoms and how they affect you. ^{Footnote [2]  Footnote [3]}

What happens after you speak to your GP?

The GP will talk through your experiences and how they’re affecting you and decide whether to refer you for an assessment for autism or ADHD. They may also consider whether other factors, such as anxiety or depression, could be contributing.

Following your appointment, the GP may decide to refer you for a specialist assessment. The NHS advises that an assessment team may ask you to fill in a questionnaire about yourself; they may give you tasks and might speak to other people or provide them with questionnaires to find out about your childhood and also read GPs’ reports.

Note that not all health authorities or GP practices work in the same way across the UK and an assessment may take more than one appointment. 

This is the big question and there’s no easy answer. The National Autistic Society highlights how varied the reactions can be ^{Footnote [4]}. Some people feel a sense of loss or wish they’d known sooner. Equally, it can be the start of a new journey, one that allows you to take ownership of who you are.

It is common to feel conflicting emotions. All reactions are valid and it’s up to you who you tell about it and when. It’s your wellbeing that counts.

Once armed with a diagnosis of autism or ADHD, some people focus on the positives – such as it allowing them to focus on small details or bring a different perspective to problem-solving (see below). You may even hear people talk about it being a ‘superpower’. Others argue that this kind of framing can lead to unrealistic expectations and may stop people from seeking the adjustments and support that they need. Both are perfectly understandable reactions.

How can understanding yourself help?

What is certain is that a diagnosis can help people to understand themselves better and provide an explanation as to why they see the world in the way that they do. What’s more, many people can also access ‘reasonable adjustments’ at their university or workplace, whether they have a formal diagnosis or are experiencing neurodivergent traits and need support.

Businesses are also recognising the need for inclusive workplaces and what started out as a policy to counter sex, religious or race discrimination, ‘inclusivity’ now tends to embrace neurodiversity as well. While this isn’t yet true for all workplaces, there is greater recognition of the strengths that neurodivergent people bring to the workplace.

Note that this isn’t an exhaustive list and won’t apply to everyone, but it highlights some strengths that many neurodivergent adults recognise in themselves:

• Strong attention to detail: particularly when working on topics or tasks they care about.
• Good with technology: for example, strong pattern-spotting or coding skills.
• Logical or analytical thinking: useful for breaking down problems and spotting connections.
• Creativity: especially in visual or spatial tasks, or when solving problems differently.
• Excellent memory: particularly for facts or areas of interest.
• Expertise and passion: often developed through deep focus on specific topics.
• Persistence and determination: when working towards clear goals or interests.
• A liking for routine and structure: which can support focus, consistency and wellbeing.

Once you have a diagnosis, it might be time to talk to your employer about the ways that they could support you. In the UK, the Equality Act 2010 requires employers to consider making reasonable adjustments for employees or job applicants who have a disability or long-term health condition, such as ADHD.

Reasonable adjustments may include having:

• a personalised workspace in a quiet area
• written instructions as well as spoken instructions
• help from another person to plan and structure your tasks
• more time to complete tasks
• headphones to block out background noise

What’s possible will depend on the size and resources of your employer, the nature of the work and the adjustment required, also the potential impact on the business, so it can help to discuss options and prioritise what would make the biggest difference. 

The National Autistic Society has the following tips that might help as you come to terms with your new realities ^{Footnote [4]}:

• Allowing yourself to stim: for example, finger‑tapping or using a fidget toy in a way that feels natural.
• Setting boundaries: for example, saying ‘no’ when you’re not comfortable with something.
• Expressing yourself more openly: for example, sharing your opinions even when others may not agree.
• Recognising early signs of distress: to help prevent or reduce overload or shutdown.
• Enjoying your interests or hobbies: without feeling pressure to meet neurotypical expectations.
• Being kinder to yourself: for example, challenging negative thoughts and accepting that everyone makes mistakes.
• Unmasking over time: working to better understand and accept yourself.

Ultimately, going through the process of being assessed and getting a diagnosis as an adult can be a huge step. It might affect how you see yourself and have an impact on close relationships. It may even stoke powerful emotions. But help is readily available, there is support and there are many coping strategies. And, for some, it will be a truly empowering change.

Listen to our colleagues to hear their experiences of neurodivergent challenges and strategies

• ADHD in adults - NHS
  A clear overview of ADHD in adults, including symptoms, diagnosis and where to get help and support.
• Royal College of Psychiatrists: ADHD in adults
  Evidence-based information on ADHD in adults, including symptoms, diagnosis, treatment and ways to get support.
• ADHD UK
  A range of tools and guidance to help people with ADHD understand their condition and information about how to access support.
• Neurodiversity – CALM (Campaign Against Living Miserably)
  A simple, supportive guide to neurodiversity and mental health. Helpful for parents and carers to explore or share with young people, and for employers wanting to better understand and support neurodivergent employees.
• Autism - NHS
  A straightforward guide to autism, explaining experiences and with information on diagnosis, support and everyday life.
• National Autistic Society: Diagnosis support
  Practical guidance for autistic people and their families. Supportive advice for before, during and after diagnosis.
• Autistica: Autism research charity
  A UK charity focused on autism research, with a strong emphasis on improving outcomes for autistic adults.
• Made By Dyslexia
  A global charity focused on changing how dyslexia is understood, with resources that highlight strengths, provide practical support and challenge common misconceptions.