Article

Living in Diagnosis Limbo: Navigate The In-Between Space

When you're neither officially diagnosed nor entirely unsure.

"Should I get diagnosed?". “Is it worth it?”

Those questions appear often - in support groups, forums, quiet conversations between friends who are piecing things together. There's rarely a simple answer.

Many people live in what might be called "diagnosis limbo" - that in-between space where you're fairly sure you're neurodivergent, but you haven't taken (or can't take, or don't want to take) that step towards formal assessment. This space gets less attention than it deserves, possibly because it doesn't fit neatly into narratives about diagnosis journeys.

Different Places on the Map

In many families, you'll find people standing in different places diagnostically. One person formally diagnosed with dyslexia at age five. Another with autism and PDA, all official and well documented. Someone else who got a "you're definitely autistic" from a counsellor but never pursued full assessment. Another who's self-identified for years based on research and lived experience.

All neurodivergent. All dealing with similar daily realities. All in different relationships with formal diagnosis.

Limbo isn't always about waiting for an appointment or gathering courage. Sometimes it's a conscious choice to exist in that knowing-but-not-officially-knowing space. Sometimes it's temporary, sometimes permanent, sometimes it shifts depending on circumstances.

Why People Stay in This Space

When someone discovers they might be autistic or ADHD (or both, or PDA, or various other neurodivergent traits), there's often a pause. Not denial, not ignorance - just a thoughtful space of "I understand myself better now, but I'm not sure about making it official."

"I finally understand why crowds feel overwhelming and special interests feel essential. Do I need a doctor to confirm what I already know?"

"I've spent 42 years being 'the creative eccentric one'. Why trade that for 'disordered'?"

"The waiting list is three years. By the time I get assessed, I'll have figured out my own strategies."

"What if I go through the whole expensive process and they say I'm not autistic 'enough'? That would be crushing."

This last concern isn't unfounded, particularly for women and high-masking individuals. The diagnostic criteria were built around boys. Many assessors still miss autistic traits in people who've learnt to mask. Some people are dismissed despite decades of struggling - told they made "too much eye contact" or seemed "too socially engaged."

And there's a deeper fear that's harder to voice: what if you pursue assessment and they say you're NOT autistic? After months or years of research, connecting dots, finally understanding why you've always felt different - to hear "actually, no" can feel devastating. Where do you go from there? Back to thinking you're just difficult, anxious, not trying hard enough?

Staying in limbo is sometimes about self-protection. Preserving the understanding you've built before someone potentially takes it away. Better to live with self-understanding that feels true than risk having it stripped away by an assessor who might not recognise high-masking presentations or might use outdated criteria.

Limbo can be isolating. If you're realising in your 30s, 40s, 50s or beyond that your brain has been neurodivergent all along, there's often grief alongside the relief. You might think about all those times you were called lazy, dramatic, too sensitive. You might mourn the child who needed help but was labelled "difficult." You might feel angry at everyone who missed the signs, whilst simultaneously feeling relieved to finally understand yourself.

This grief is particularly present for women who've often collected other diagnoses first - anxiety, depression, OCD, giftedness, even borderline personality disorder - before anyone considered autism. Years of medication that didn't quite work. Therapy that helped but missed something fundamental. Thinking you were broken in a different way than you actually were.

This grief exists whether you pursue formal diagnosis or not. Limbo doesn't protect you from processing decades of misunderstanding - you're just doing it without official documentation.

The Practical Bin

Self-understanding is valid. But formal diagnosis often remains the only key to practical support.

The system typically requires documentation for workplace accommodations under the Equality Act, university support services, Access to Work funding, disability benefits, ADHD or OCD medication, Educational Health Care Plans, and school adjustments.

This creates tension: you might not want external validation of your neurodivergence, but you might need the practical support that only comes with formal diagnosis.

There's also employment complexity. Even with diagnosis, disclosure makes you vulnerable in unpredictable ways. Some people pursue diagnosis for accommodations, then realise they're afraid to use it.

Living in limbo means navigating this: authentic self-understanding on one side, systemic access on the other, trying to figure out which matters more in your current circumstances.

Limbo as Destination: What It Actually Looks Like

Some people actively choose to stay in diagnosis limbo - not avoiding truth, but finding value in that in-between space. But what does that actually look like in practice?

Using strategies without permission. You start wearing noise-cancelling headphones in the office because you've realised that background chatter derails your concentration. You build in recovery time after social events. You create detailed routines and systems because executive function is genuinely harder for you. You don't wait for an official diagnosis to implement accommodations that help your brain work better.

Explaining yourself without diagnostic language. At work, you might say "I focus better with headphones" rather than "I have auditory processing difficulties." You tell friends "I need to leave by 9pm or I'll be exhausted tomorrow" instead of explaining sensory overload. You're honest about your needs without invoking medical terminology or disability frameworks.

Selective disclosure. You might be open about being neurodivergent with close friends or in online spaces, whilst being more cautious at work or with family who might dismiss self-identification. You learn to read situations and decide when explaining helps and when it creates more problems than it solves.

Advocating without formal documentation. You research your rights under the Equality Act and discover that whilst diagnosis helps, it's not always required - what matters is demonstrating substantial impact on daily activities. You learn to ask for what you need by framing it practically: "I work better with written instructions" rather than "my ADHD makes verbal instructions difficult."

Building your own support systems. Without access to formal services, you piece together your own network. Online communities. Books by neurodivergent authors. Therapy with someone who understands neurodivergence even without requiring diagnosis. Friends who get it. Your own research and experimentation with what actually helps.

Raising neurodivergent children whilst exploring your own neurodivergence. Many parents discover their own neurodivergence through their child's assessment. They implement neurodivergent-affirming parenting - understanding sensory needs, respecting stimming, allowing for recovery time - because it works, regardless of whether they ever pursue their own diagnosis. They advocate for their child whilst quietly applying the same understanding to themselves.

Living with uncertainty as a choice. For some, limbo isn't a waiting period before "real" diagnosis - it's actually the right place to be. It's where you get to define yourself by your lived experience rather than fitting into diagnostic boxes. Where you can explore what neurodivergence means for you without needing professional validation. Where you hold your truth without external confirmation.

The practicalities aren't always straightforward. You're implementing accommodations without the "proof" that makes them officially reasonable. You're educating people about neurodivergence whilst they might dismiss you because "you're not diagnosed." You're navigating systems built around formal diagnosis using workarounds and creativity.

But for many people, it works. Not perfectly - nothing about navigating a neurotypical world as a neurodivergent person is perfect - but well enough.

Navigating Relationships in Limbo

One of the harder aspects of diagnosis limbo is explaining your position to other people. How do you tell your partner you're "pretty sure but not officially diagnosed"? What happens when your parents dismiss your self-understanding because "you don't have a diagnosis"? When friends compare your struggles to their own and you can't point to official documentation?

With partners and close family. Some people find that loved ones are relieved to have a framework for understanding struggles they've witnessed for years. "Oh, that makes so much sense" becomes a common response. Others face skepticism: "Everyone feels like that sometimes" or "Don't label yourself unnecessarily." The lack of formal diagnosis can make your self-understanding feel more vulnerable to dismissal.

You might find yourself in conversations like: "I think I'm autistic" met with "But you don't act like that boy from school who was autistic." Or explaining executive function difficulties and hearing "Everyone struggles with organisation, you just need better systems." Without the weight of professional diagnosis, your self-knowledge can feel easier for others to minimise.

Some people in limbo choose to be open about their exploration: "I'm figuring out that I'm probably ADHD and it explains a lot about how I've always worked." Others keep it private until they're more certain. Neither approach is wrong - it depends on your relationships and what feels safe.

With parents. If you're discovering neurodivergence as an adult, telling your parents can be particularly fraught. Some parents are supportive, even relieved: "That explains so much about your childhood." Others are defensive: "We would have noticed" or "The doctors said you were fine." Still others worry you're limiting yourself: "Don't use that as an excuse."

The limbo status can make this harder. Without formal diagnosis, it's easier for parents to dismiss your self-understanding as self-diagnosis run amok or internet overidentification. You might find yourself in the strange position of grieving that they didn't notice whilst they're insisting there was nothing to notice.

With friends. Friend groups vary wildly. Some welcome neurodivergent self-understanding and adjust naturally: "Oh, that's why you always need to leave parties early" becomes understanding rather than judgment. Others might not know what to do with the information, especially without formal diagnosis to anchor it.

You might face well-meaning but unhelpful responses: "Everyone's a little bit autistic" or "I think I might be too!" when they're clearly not but want to relate. Or the dreaded "Have you tried just...?" followed by suggestions that completely miss the point.

At work. This is where limbo gets particularly complicated. Asking for accommodations without diagnosis puts you in a vulnerable position. You can't invoke disability law as clearly. You can't point to official documentation. You're asking for flexibility based on self-understanding, which some managers respect and others dismiss.

Some people navigate this by framing requests practically without mentioning neurodivergence at all: "I'm more productive with written instructions" doesn't require explaining your auditory processing difficulties. Others are more open about exploring neurodivergence, testing whether their workplace is safe for that disclosure.

With your children's schools or services. If you're parenting a neurodivergent child whilst being undiagnosed yourself, you might face questions: "Are there any family members with autism?" Answering honestly - "I strongly suspect I am, but I'm not formally diagnosed" - can strengthen your child's case or make professionals take you less seriously, depending on who's assessing.

Setting boundaries around your limbo status. You're allowed to change how you talk about yourself. You can be certain one day and uncertain the next. You can use neurodivergent language in some contexts and not others. You can tell some people and not others. Your relationship with diagnosis is yours to define, and you don't owe anyone else consistency or certainty about it.

The key is finding people who can hold space for the complexity - who understand that self-knowledge without formal diagnosis is still knowledge, that uncertainty is a valid place to stand, that you can be figuring yourself out and still deserve respect.

Finding Community Without Papers

One of the most powerful aspects of understanding yourself as neurodivergent is discovering you're not alone. There are whole communities of people who understand what you're experiencing. But navigating those communities from diagnosis limbo can feel complicated.

Online communities and the diagnosis question. Different spaces have different approaches to self-identification. Some neurodivergent communities explicitly welcome self-identification: "diagnosed or self-identified, you're welcome here." Others are more gatekeepy, requiring formal diagnosis or at least "pursuing diagnosis" to participate fully.

You'll find valuable spaces on Twitter/X (hashtags like #ActuallyAutistic or #ADHD), Facebook groups for late-diagnosed adults, Reddit communities, Discord servers. These offer connection with people who deeply understand what you're processing because they've processed it too - or are processing it right now.

A word of caution: not all neurodivergent communities are equally welcoming. Some are wonderfully supportive and informative. Others can be gatekeepy, full of infighting about who's "really" neurodivergent, what's the "right" way to be autistic or ADHD, whether self-diagnosis is valid. If a space doesn't feel good, leave it. There are better ones.

What to look for in communities that work for limbo. Spaces that explicitly welcome self-identification. Groups that recognise intersectionality - neurodivergence plus race, gender, sexuality, class, all the ways identity compounds. Communities that balance validation with practical support. People who can hold complexity rather than insisting on one "correct" experience. Moderators who shut down gatekeeping quickly.

Local support groups. Check your council, charities like National Autistic Society or ADHD UK, local parent forums. Many welcome neurodivergent parents regardless of diagnosis status. Some areas have peer support groups specifically for adults exploring whether they're neurodivergent. These can provide in-person connection that online spaces can't quite replicate.

Professional support. Working with a therapist who specialises in neurodivergence can be valuable whether you're diagnosed or not. Someone who can help you process the grief, explore what your particular brain needs, develop strategies that actually work for you. Not all therapists require formal diagnosis - many work with self-identified neurodivergent clients routinely. What matters is finding someone who respects your knowledge of your own experience.

Books and resources by neurodivergent authors. These can provide both information and that validating sense of recognition. Unmasking Autism by Devon Price, Divergent Mind by Jenara Nerenberg, books by actually autistic and ADHD authors rather than just professionals studying them. You don't need a diagnosis to benefit from reading about experiences that mirror your own.

Your existing people might surprise you. When you start talking about this - even tentatively, even in limbo - you might discover friends, family members, or colleagues who've had similar realisations. Or who aren't neurodivergent themselves but are capable of understanding and supporting you through this exploration. Don't underestimate neurotypical people's capacity for empathy and growth.

Navigating imposter feelings. Participating in neurodivergent spaces without formal diagnosis can trigger imposter syndrome. "Am I neurodivergent enough to be here?" "What if I'm wrong about myself?" "Do I have the right to use these spaces?"

These feelings are common and understandable. But self-understanding based on extensive research and lived experience is valid. You're not taking up space that belongs to "really" neurodivergent people - if neurodivergent experiences resonate deeply with you, if strategies designed for neurodivergent brains help you, if you're finding your people in these communities, you belong there.

Building your own network. Sometimes the most valuable community isn't a formal group - it's the informal network you build. A few close friends who get it. Online connections with people navigating similar questions. A therapist who understands. Your partner, if they're willing to learn. Family members who recognise themselves in your descriptions. Other parents in your child's neurodivergent peer group who quietly acknowledge they're probably neurodivergent too.

Community doesn't require formal diagnosis. It requires shared understanding, mutual support, and space to be authentic. Those things exist in limbo too.

Questions Without Answers

No one can answer the diagnosis question for someone else. But certain questions might help you figure out what's right for your current situation.

If you're wondering whether to pursue formal assessment:

What would diagnosis actually give me - access, validation, treatment, community?
What am I protecting by staying in limbo - my identity, my energy, my hope, my control?
Can I access what I need without diagnosis, or is documentation necessary?
How would I cope if an assessor disagreed with my self-understanding?

If assessment feels impossible right now:

What strategies can I try regardless of diagnosis?
What communities welcome me based on experience rather than paperwork?
Who in my life can I educate about my needs without official diagnosis?
What would make assessment feel more possible?

If you're supporting someone in limbo:

Am I respecting their knowledge of their own experience?
Am I pushing for diagnosis because I need it, or because they do?
Can I hold space for uncertainty without trying to resolve it?
Am I offering options rather than directions?

No Deadline

Your neurodivergence doesn't expire if you don't get it officially confirmed. Your understanding of yourself doesn't have a sell-by date.

You can research for years before pursuing assessment. Try strategies without formal diagnosis. Change your mind multiple times. Pursue assessment and realise it didn't give you what you needed. Stay in self-understanding indefinitely. Wake up one day ready for that official letter.

All of these paths exist. All of these timelines work for different people.

What doesn't work is letting someone else - well-meaning friend, judgemental family member, or internet stranger - decide what your relationship with diagnosis should look like.

What matters

Whether formally diagnosed, self-identified, or somewhere in between, what matters is what your brain actually needs. What strategies might ease daily life. Healing from accumulated neurodivergent trauma. Honouring your experience as it is. Finding support that works wherever you are.

Diagnosis limbo isn't a problem requiring solution. It's often just where you are. The questions you're asking yourself in this space - about identity, about systems, about what you need and what you're protecting - these deserve time. They deserve to be answered on your timeline.

Support exists regardless of where you stand diagnostically.

Exploring what comes next? These might help:

Late Discovery: Understanding the Experience
Post-Diagnosis: Now What?
Supporting Your Child Through Assessment

If you're navigating diagnosis limbo - whether processing uncertainty, figuring out next steps, or simply needing to be understood - neurodiversity-informed, trauma-sensitive counselling can support that. Book a free discovery call to explore what diagnosis limbo looks like for you.

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