When a Diagnosis Changes How You See Yourself

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Autism, ADHD and AuDHD: Meeting yourself with Kindness

28 August – written by Katrin Kemmerzehl – Blog

Something can click when you realise that you are autistic, have ADHD, or are AuDHD.

Things that have felt confusing for years can suddenly start to make sense. The exhaustion after socialising. Why getting started on something that seems simple can feel so difficult. How you can spend hours completely absorbed in something that interests you, yet struggle to begin a task you know needs doing. Why you need more quiet and recovery time than others seem to.

You may have spent years wondering why everyday life sometimes takes so much effort. Perhaps you look back at school, work, friendships, relationships or family life, and things start to make sense. There can be enormous relief in that.

But clarity can bring other feelings with it, too. A diagnosis, particularly one that comes later in life, may bring sadness about how hard things were before you understood yourself.

Growing up without the right support or understanding, you may never have had the words for why certain things felt so draining, overwhelming or simply “off”.

There might be anger about not being recognised earlier, or frustration about how often you were expected to try harder. And sometimes, you start to see yourself differently.

Looking back with new information

A diagnosis can change the way you remember your own life.

You might think back to being described as sensitive, difficult, distracted, intense, shy or disorganised. Perhaps you were told you had so much potential, even though some things seemed much harder.

Over time, you may have become very good at holding things together. You got through school and got your work done, even when it meant staying late. You remembered the things other people needed because forgetting them felt like something you couldn’t risk.

You watched others and worked out what was expected of you. You might have rehearsed conversations in your head or spent ages thinking about how a message might sound before sending it.

You were finding your way through life with the understanding you had at the time. For some people, a later diagnosis offers a new way of making sense of experiences that they had previously struggled to understand or had been hard on themselves about.

Research with people receiving an autism diagnosis later in life suggests that diagnosis can lead to a re-evaluation of earlier experiences and greater self-understanding, while also bringing difficult feelings about the years before diagnosis (Stagg & Belcher, 2019).

You might find yourself remembering something that happened years ago and seeing it through different eyes. A difficult time at school might suddenly make more sense. So might a friendship or work relationship that always seemed complicated.

You may begin to understand yourself differently, too. Realising that you were doing your best to navigate experiences you didn’t yet have the words or understanding for can bring up a lot of feelings.

Relief and grief can sit side by side

You can feel very glad to have found an explanation and still feel angry that it took so long. Perhaps you feel grateful for the understanding you have now, while also feeling sad about what was missing when you were younger.

The diagnosis might bring back memories of years spent believing you were too sensitive, difficult, unreliable or simply not trying hard enough. You may also find yourself wondering whether things might have been different at school, in relationships, at work, or in some of the choices you made along the way. There can be a real sense of loss in that.

And then there can be excitement and hope. Finally having words for your experience can bring a sense of possibility. Things that once felt confusing may begin to make sense, and you may start to wonder what life could look like.

Relief, sadness, anger, curiosity and excitement can all be part of making sense of a diagnosis. They can sit alongside each other, sometimes changing from one day to the next.

For some people, a later diagnosis helps make sense of experiences that have been difficult to understand for years. It can bring a greater understanding of yourself and your needs, while also bringing up difficult feelings about the past.

Research into later diagnosis reflects this mix of greater self-understanding alongside difficult emotions about the years before diagnosis (Stagg & Belcher, 2019).

Feeling accepted, both by yourself and by other people, also seems to matter for wellbeing (Cage et al., 2018).

It’s okay not to be sure how to feel about your diagnosis. Sometimes it takes time to understand what it means, and what you want to take from it.

When you start noticing how much you’ve been adapting

After a diagnosis and with a new understanding of yourself, you may begin to notice how much effort has gone into getting through everyday life.

Perhaps you realise how often you have been keeping yourself going when you were already tired. How quickly you notice what other people need. How often you say yes before checking whether you actually have the energy for it. How much thought can go into seeming comfortable, easygoing or fine when you are anything but.

For some neurodivergent people, this kind of adaptation is described as masking or camouflaging. It can be a way of finding connection, avoiding judgement, feeling safe or navigating situations that feel difficult.

While this can be a useful way of managing social situations, sustained masking can also be associated with poorer wellbeing and mental health difficulties (Zhuang et al., 2023; Khudiakova et al., 2024).

You might recognise some of this without ever having consciously thought about it. Perhaps adjusting has become so familiar that you don’t always notice you’re doing it. You just know how to get through different situations, how to read what is expected, and how to make things work.

Sometimes it is only when you become exhausted that you realise how much effort has been involved. Socialising might leave you needing more time to yourself. Work might take most of your energy for the day. Keeping up with everyday life might start to feel harder than it used to.

For some people, this is part of why a later diagnosis can feel so significant. You may begin to notice that some of the ways you have learnt to manage life are becoming harder to sustain, while you are still finding out what actually works for you.

What feels like a choice for me, and what have I learnt I need to do?

When coping starts to cost too much

Sometimes the ways you have managed life for years begin to feel less sustainable.

Navigating a new job, a relationship, family life, caring for someone, moving house or a long period of stress can change how much energy you have available.

You might find yourself thinking, ‘I used to be able to do this’.

For autistic people, long periods of demands and adapting can sometimes lead to autistic burnout. This can involve deep exhaustion, having less capacity than usual and finding everyday demands much harder to manage (Raymaker et al., 2020).

With ADHD, the effort involved in remembering, organising, prioritising and getting started can also become harder to sustain when life becomes more hectic.

For people with AuDHD, autistic and ADHD experiences can overlap, creating their own combination of challenges around attention, energy and everyday life (Waldren et al., 2024).

Everyone’s experience is different. What takes a lot out of one person may be manageable for another. And something that worked for you for years may be harder to sustain.

Your capacity may be telling you that something needs more attention, more support or simply more space.

Learning to see yourself with kindness

Understanding your neurodivergence can give you a new way of making sense of yourself and your experiences. It may help explain some things, while leaving other parts of life open to curiosity, growth and change.

A task that feels hard to begin might become something to get curious about. Perhaps it feels too big, you are not sure where to start, or your attention is somewhere else.

Overwhelm can offer clues too. You may begin to notice what has been happening around you, how much you have already taken in, and what helps you feel more settled.

You might also start noticing the conditions in which you feel most comfortable and able to be yourself. Maybe you concentrate better with fewer distractions, or find that certain environments suit you better.

Research with autistic adults has found links between autism acceptance and better mental health, while research with adults with ADHD has highlighted the importance of self-compassion for wellbeing (Cage et al., 2018; Beaton et al., 2022).

Sometimes kindness is surprisingly practical. It might mean leaving more time between social plans, resting before you are completely exhausted, asking for the lights to be turned down, taking longer to reply to a message, and giving yourself permission to choose what works for you.

It might mean making a little more room for yourself, without immediately wondering whether you should need less.

These things can be small ways of saying, ‘I count. What I need counts too.‘

What might life look like now?

A later diagnosis can bring more than an explanation for the past. It can also open up questions about what you want life to look like now.

What matters to you? What kind of relationships feel good to be in? What helps you feel settled, connected and able to be yourself?

Perhaps you are beginning to think differently about work, rest, friendships or how much space you need for yourself.

There does not need to be a dramatic reinvention. Sometimes it’s about making a more time for what works for you and getting to know yourself with greater understanding.

A diagnosis does not erase the person you were before you had the words for your experience. The child who struggled, the teenager who tried to work everything out and the adult who found ways to keep going were all you.

The ways you learnt to cope developed for reasons, and they may have helped you belong, feel safe or get through difficult situations.

A diagnosis may not change who you are. It may help you make sense of some of the things you’ve experienced and understand yourself a little better.

How Counselling Can Help

Counselling can give you time and space to make sense of what a diagnosis means for you and how it fits with your experiences.

Perhaps you want to understand your past a little better, make sense of parts of your life that have felt difficult, think about your relationships, find your way through burnout, or work out what you need now. You might simply want to understand yourself with a little more kindness and make sense of what you are learning about yourself.

You can bring the questions, mixed feelings and things you are still trying to make sense of. If any of this feels familiar, you’re very welcome to get in touch.

References

Katrin Kemmerzehl
I’m a qualified counsellor based in Newcastle upon Tyne.
Please get in touch if you’d like to arrange a consultation.

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