Written by Dr Sara Tookey
As a psychologist and person with lived experience of late-diagnosed ADHD, I often encounter adults questioning whether they need a formal diagnosis for ADHD or autism in adulthood. This question is complex and nuanced, with no one-size-fits-all answer.
Key Learning Points:
Formal diagnosis can provide validation, access to support, and improved self-understanding
Cost and accessibility of diagnostic assessments can be significant barriers for many
The quality and comprehensiveness of the assessment should be weighed against speed and affordability
Diagnosis isn't always necessary for self-acceptance or accessing some forms of support
Neurodiversity frameworks like the 'Neurodiversity Smorgasbord' offer ways to understand neurodiversity beyond diagnostic labels
Self-identification and connecting with neurodivergent communities is often valuable, with or without formal diagnosis
Consider seeking professional guidance if you're unsure whether to pursue a diagnosis
The decision to seek diagnosis should be based on individual needs and circumstances
Understanding neurodiversity can be beneficial, regardless of diagnostic status
This article explores the pros and cons of adult ADHD and autism diagnosis, alternative perspectives on neurodiversity, and factors to consider when deciding whether to seek a formal diagnosis.
Updated 14/10/24 - to include additional information regarding alternatives to diagnoses, balancing the perspective with pros and cons of seeking a diagnosis and resources to support workplace adjustments,
The Value of Getting an ADHD or Autism Diagnosis in Adulthood
Many adults seek an ADHD or autism assessment because they feel 'different', confused about who they are “beneath the mask” or struggle with daily life demands. Common difficulties that might lead you to consider a diagnosis include:
For ADHD:
Difficulty with attention regulation, focus, and completing tasks
For example
Struggling to finishing a task for work because you keep getting distracted by emails, social media, other things on your to do list, or to tidy or reorganise your space
Starting multiple projects with enthusiasm but but struggling to finish them
Finding it nearly impossible to focus on tasks you find boring, even if they're important
Chronic disorganisation, procrastination, and time management issues
For example:
Often running late for appointments despite your best intentions and using reminder systems
Forgetting to pay bills on time, leading to late fees
Having a cluttered living space because you struggle to maintain organisation systems
Impulsivity in decision-making and actions
For example:
Interrupting others or blurting out thoughts in conversations or meetings, without considering the consequences or appropriateness of sharing
Often making purchases without considering if it’s needed or the financial consequences
Changing plans at the last minute based on a sudden whim
Emotional dysregulation and rejection sensitivity
For example:
Feeling intensely upset over minor criticism, like a coworker suggesting a small change to your work
Experiencing rapid mood fluctuations throughout the day, going from excited to frustrated to sad within hours
Overreacting to perceived slights, like assuming a friend dislikes you because they took a while to respond to a text
Hyperactivity or restlessness
For example:
Feeling and constant urge to move or fidget, like tapping your foot or playing with objects during meetings
Having racing thoughts that make it difficult to fall asleep at night
Talking excessively or having trouble waiting for your turn in conversations, maybe because you worry you may forget them and/ or because you feel a sense of urgency
Difficulty waiting in line or on customer service phone lines
For Autism:
Challenges with social communication and interaction
For example:
Struggling to understand sarcasm or jokes, often taking things literally
Finding it difficult to maintain eye contact during conversations
Feeling exhausted after social interactions, even if you enjoyed them
Difficulty understanding and expressing emotions
For example:
Struggling to identify and name your own emotions
Finding it challenging to understand why others are upset in certain situations
Having trouble expressing empathy in ways others expect, even when you deeply care
Sensory sensitivities or differences
For example:
Feeling overwhelmed by loud noises, bright lights, or certain textures
Being unusually sensitive to smells that others don't notice
Seeking out deep pressure or specific textures for comfort
Need for routine and difficulty with unexpected changes
For example:
Feeling extremely anxious when your daily routine is disrupted
Struggling to adapt when plans change at the last minute
Having specific rituals or routines that you feel compelled to follow
Intense focus on specific interests or topics
For example:
Becoming deeply absorbed in a particular subject and learning everything about it
Talking at length about your interests without realising others might not share your enthusiasm
Finding it difficult to engage in small talk or discuss topics outside your areas of interest
Some challenges can overlap or co-occur in both ADHD and ASD, such as executive function difficulties, burnout from navigating a neurotypical world, and secondary conditions like anxiety and depression.
For a more in-depth look into how ADHD symptoms manifest in adulthood, you might find our article "Is Adult ADHD the Latest Trend?" helpful. For a closer look at how autism may present in adulthood and the insights into the neurodiversity paradigm, see our article, “Celebrating Neurodiversity: Understanding the Autism Spectrum”.
If you're experiencing these challenges, a diagnosis can offer several benefits:
Explanation and validation for lifelong struggles
Access to appropriate support services and accommodations
A framework for understanding yourself better
Connection to a community of individuals with similar experiences
Guidance towards effective management and accommodation strategies
The Zebra Analogy: Finding Your Tribe
The image above depicts a powerful analogy used by many in the neurodivergent community to explain why a diagnosis can be so meaningful. This analogy beautifully captures how diagnosis can provide a sense of belonging and self-understanding. It allows you to connect with others who share your experiences and learn strategies tailored to your neurotype.
Research supports the potential benefits of diagnosis. A recent study found that those with a diagnosis reported a higher quality of life, including better work productivity, self-esteem, and functional performance (Pawaskar, M., et al., 2020), when compared to people with symptoms of ADHD but no formal diagnosis . Similarly, research has shown that information gained from a diagnosis can facilitate an improved self-acceptance and bring about a sense of relief for autistic individuals (Ghanouni and Seaker, 2023).
Furthermore, those who identify with ASD or ADHD as a form of neurodiversity rather than from a deficit/medical model, often experience higher self-esteem and self-acceptance, which acts to protect against depression and anxiety (Cage et al., 2018; Cooper et al., 2017). Diagnosis can also facilitate ease of access to a supportive peer network of similar individuals, allowing them to feel more understood and accepted, bolstering the formation of a new ASD identity (Huang et al., 2020; Kickey at al., 2018)
While diagnosis can offer many benefits, it's important to recognise that current diagnostic systems have limitations in fully capturing the range of neurodivergent experiences. Sonny Jane Wise, a neurodiversity advocate and lived experience educator, proposes the 'Neurodiversity Smorgasbord' as an alternative framework for understanding neurodiversity beyond diagnostic labels. Sonny argues that "our differences, our altered states, our experiences are often only validated or seen as real if we have a diagnosis" (Wise, 2023). This perspective encourages us to consider whether formal diagnosis is always necessary for self-understanding or accessing support, and highlights the need for more flexible and inclusive understandings of neurodiversity.
Whether you pursue a formal diagnosis or choose to self-identify, learning about neurodiversity can be a valuable journey of self-discovery and self-acceptance. The key is to make the decision that feels right for you and supports your wellbeing.
When You Might Not Need a Diagnosis
The 'Neurodiversity Smorgasbord' concept suggests that each person's neurodiversity profile is unique, like a plate at a smorgasbord. This perspective proposes that understanding these individual differences can lead to more tailored support without necessarily requiring a formal diagnosis (Wise, 2023). Furthermore, it highlights the importance of individuals being able to define and make meaning of their own experiences, rather than relying solely on medical definitions.
With this in mind, you might not need a diagnosis if:
You've developed effective coping strategies on your own
Your traits don't cause significant distress or impairment in your daily life
You view your neurodivergent traits positively, as an integral part of your personality
You are able to access appropriate services to support your needs, and these do not require a formal diagnosis
You don't want, for whatever reason, to have an official diagnosis
For ADHD specifically, you might not need a diagnosis if your symptoms are mild and don't significantly impact your daily functioning. For autism, if you're comfortable with your social interaction style and sensory experiences, and they don't cause distress, you might choose to self-identify without seeking a formal diagnosis.
Many individuals find value in understanding their neurodivergent traits and adapting their environment accordingly, even without an official label. Research psychologist and autistic activist, Jacqueline den Houting (2019) notes that many adults find that understanding neurodiversity concepts and connecting with neurodivergent communities can be helpful, even without a formal diagnosis.
Many self-diagnosed individuals have conducted extensive research and often used multiple self-diagnostic tools before identifying as neurodivergent. A study by Sizoo et al. (2015) found that self-diagnostic tools can be quite accurate for autism diagnoses in particular. While professional assessment can be supportive and is the most accurate way to come to a diagnosis, self-diagnosis shouldn't be dismissed, especially given the barriers many face in accessing formal diagnosis.
Ruling Out and Identifying Other Conditions:
ADHD and autism are neurodevelopmental conditions, meaning symptoms should have been present since childhood (before the age of 12), though they may manifest differently in adulthood. If your challenges are recent, they might be due to other factors (Faraone et al., 2015).
It's important to consider that some conditions may mimic the symptoms of ADHD or autism. Before pursuing a diagnosis, it's worth exploring whether your symptoms might be better explained by:
For ADHD-like symptoms:
Anxiety disorders
Depression
Sleep disorders
Thyroid problems
Substance use disorders
Hormonal fluctuations in women (like perimenopause)
For Autism-like symptoms:
Social anxiety disorder
Obsessive-compulsive disorder (OCD)
Schizoid personality disorder
Speech and language disorders
Sensory processing disorders
Research found that conditions such as anxiety and mood disorders can present with symptoms that overlap with autism and ADHD, often leading to misdiagnosis (Kentrou et al., 2019; Katzman et al., 2017).
It’s also important to note that some conditions like anxiety and depression can co-occur in adults with Autistic and/ ADHDers (Faraone et al., 2015; Griffiths et al., 2019), and research has suggested that not having a diagnosis has a significant negative impact of on the lives of people and families of people with ADHD and ASD (French et al., 2023), reducing physical and mental health outcomes and increasing risks of harm. Although these findings are limited and may not include self-diagnosed individuals who have sought professional support along their journey of understanding their neurodivergence.
Generally, if your symptoms are recent or situational, they may be due to life changes, stress, or other environmental factors rather than a neurodevelopmental condition. In these cases, addressing the underlying issues may be more beneficial than pursuing an ADHD or autism diagnosis at first instance.
Accessibility and Quality of Assessments
It's important to consider the practical aspects of obtaining a diagnosis. In many places across the UK for example waiting lists for assessments on the National Health Service (NHS) a can be years long, which has led to an increase in private assessment options to support the need for such services and the reduced capacity of overburdened and understaffed NHS services. However, while private assessments may be quicker, they can be expensive and may not always provide the same depth of assessment as more comprehensive evaluations.
When considering an assessment, it's crucial to weigh the quality and usefulness of the diagnosis against speed and affordability of assessment. Quick, lower-cost private assessments might bypass long waiting lists, but they may also lack the comprehensive nature that makes the outcome truly meaningful or supportive. The value of the assessment should align with your reasons for seeking it. For some, a more thorough assessment might be worth the wait or cost if it provides a deeper understanding and more tailored support recommendations.
These barriers to accessing high-quality assessments are a valid consideration when deciding whether formal diagnosis is right for you. If comprehensive assessment is not accessible to you due to cost or waiting times, self-identification and seeking support through neurodivergent communities and charities might be valuable alternatives.
The Right Time and Approach
If you do decide to seek a diagnosis, it's crucial that it's done at the right time and in the right way:
When you're ready and open to the process: Diagnosis can be emotionally challenging, so ensure you're in a good place to handle potential outcomes.
Using a comprehensive, supportive, and client-centred approach: Look for professionals who specialise in adult ADHD or autism and use up-to-date diagnostic criteria.
Focusing on your unique experiences and needs: A good diagnostic process should consider your entire life history, not just current symptoms.
When you need formal support or accommodations: If you require workplace adjustments or access to specific therapies, a formal diagnosis may be necessary.
If you're considering medication for ADHD: A formal diagnosis is required to access medication in most cases.
For many neurodivergent individuals, trusting others with their experiences can be challenging due to past misunderstandings or dismissals. A good diagnostician should create a safe, non-judgmental space for you to unmask and share your authentic experiences.
Remember, the goal of diagnosis should be to improve your quality of life and self-understanding, not to fit you into a particular box. Receiving a diagnosis as an adult can often bring up some complicated emotions, whether it’s grief over lost opportunities, relief at finally understanding certain struggles, or anger over symptoms and struggles having been overlooked and unsupported for so long - the process of coming to terms with a diagnosis and understanding what it means for you can be a challenging and deeply personal experience.
Whether you choose to pursue a diagnosis or not, learning about neurodiversity can be a valuable journey of self-discovery and self-acceptance. If you choose to seek a diagnostic assessment, the process should be empowering and informative, regardless of the outcome. The key is to make the decision that feels right for you and supports your wellbeing.
A Neurodivergent Perspective on "Functional Impairment"
When discussing neurodiversity in the context of work and daily life, it's important to understand the term "functional impairment" - the extent to which an individual's neurodivergent traits interfere with their ability to perform tasks or participate fully in environments designed for neurotypical individuals. This is because, disability status and the need for accommodations are often based on the assessment of functional impairment rather than on diagnosis alone. However, recognition of these impairments and provision of necessary accommodations can vary widely depending on location, laws, and organisational policies. This variability has led to unclear guidance for both healthcare practitioners and employers, resulting in situations where neurodivergent individuals may need specific accommodations to thrive in their working lives, but without a formal diagnosis or clear legal mandate, employers may not recognise or fulfil these requests. This highlights the need for a more nuanced understanding of neurodiversity and functional impairment in the workplace, one that focuses on individual needs and strengths beyond diagnostic labels. See ADHD Works site for free templates to support disclosure of disability to employers and requesting accommodations/ adjustments at work.
The Zebra in a Horse's Stable
When considering diagnosis for either ADHD or autism, it's worth questioning whether your challenges stem from your traits or from a society that isn't accommodating to neurodiversity. The social model of disability suggests that many difficulties arise from environmental barriers rather than inherent deficits (Kapp et al., 2013).
For example:
An autistic person might struggle in a noisy open-plan office due to sensory sensitivities.
Someone with ADHD might have difficulty with rigid schedules that don't allow for their fluctuating attention levels.
Both might excel in environments that accommodate their unique processing styles.
This perspective shifts the focus from "fixing" the individual to adapting environments and societal expectations. It recognises that what appears as 'impairment' in one context might be a strength in another. Think of neurodivergence as a different 'operating system' - an Apple brain in a world of Windows. Neither is inherently better, but they may need extra effort to communicate effectively.
The neurodivergence perspective values neurodiversity as a form of human variation, much like biodiversity in nature, essential for a rich, innovative, and adaptable society. The goal of support therefore shouldn't be to eliminate neurodivergent traits, but to create inclusive environments where diverse cognitive styles can thrive and to support individuals to manage challenges that arise in navigating as a neurodivergent person in a world created for neurotypical people.
Societal Views of Neurodivergence
As awareness of neurodivergent conditions increases, so too does stigmatisation and pathologisation in some quarters. Some view seeking diagnosis as 'trendy' or an 'excuse,' while others overemphasise the 'superpower' narrative. Both extremes can be harmful. The reality is more nuanced - neurodivergence brings both challenges and strengths, varying widely between individuals.
The Importance of Inclusive Research and Understanding
The neurodiversity community is diverse, and our understanding of ADHD and autism continues to evolve. It's crucial that research and clinical practice expand to include a wider range of experiences, including those of women, people of colour, and LGBTQIA+ individuals. As Leadbitter et al. (2021) suggest, by valuing the expertise of neurodivergent individuals and embracing practices that respect diverse neurotypes, we can move towards more inclusive and effective support systems.
Conclusion & Summary
Whether or not to seek a diagnosis for ADHD or autism as an adult is a personal decision. If you're coping well and don't need formal accommodations or treatment, you might not need an official diagnosis. However, if you're struggling significantly or need access to specific supports, pursuing a diagnosis could be beneficial.
Remember, neurodiversity represents a variation in the how the brain processes information. It is not an inherent dysfunction. Whether you choose to seek a formal diagnosis or not, understanding and embracing your mind's unique style can lead to improved self-acceptance and life satisfaction. The goal is to find the path that best supports your wellbeing and helps you thrive.
If you're unsure, consider speaking with a healthcare provider knowledgeable about adult ADHD and autism. They can help you weigh the potential benefits and drawbacks of diagnosis in your specific situation.
Final Point: What Everybody Needs to Know About Neurodivergence
Whether diagnosed or not, neurodivergent individuals often face systemic barriers and vulnerabilities. Whether professionally diagnosed or self-identified, it's crucial to remember that being neurodivergent is not a choice. For those who self-diagnose later in life, traits may become more apparent as they feel safer to be themselves. Supporting individuals on their journey of self-discovery, regardless of their diagnostic status, is essential for their well-being and self-acceptance.
Note: This article is for informational purposes only and does not constitute medical advice. Always consult with a qualified mental health professional for personalised guidance.
WANT TO LEARN MORE?
For those interested in deepening their understanding of ADHD and autism in adulthood and/or the neurodiversity perspective, the following resources may be helpful:
Wise, S. (2024). The Neurodiversity Smorgasbord: An Alternative Framework for Understanding Differences Outside of Diagnostic Labels. https://www.livedexperienceeducator.com/blog/theneurodiversitysmorgasbord
ADHD Works: Provides free templates for requesting "reasonable adjustments" at work and knowing your rights as a neurodivergent individual at work.
The ADHD Women's Project - A website offering resources and community for women with ADHD.
The Autistic Self Advocacy Network (ASAN) is a leading advocacy organisation run by and for autistic individuals. Their website provides extensive information and resources on autism acceptance and neurodiversity.
Foundations for Divergent Minds (USA based)
For those interested in exploring the intersection of neurodivergence and other aspects of identity, our article "LGBTQIA+ and Neurodivergent: Shining a Light on Intersectionality and Mental Health" https://www.truenorth-psychology.com/post/neurodivergent-pride-mental-wellness-for-lgbtqia-communities
Tookey, S. (2024). Is Adult ADHD the Latest Trend? True North Psychology. https://www.truenorth-psychology.com/post/is-adult-adhd-the-latest-trend
Tookey, S. (2024). The Hidden Struggle: When High-Functioning ADHD in Adulthood Leads to Burnout and Breakthrough. True North Psychology. https://www.truenorth-psychology.com/post/hidden-struggle-of-high-functioning-adhd-in-adulthood
Tookey, S. (2024). Celebrating Neurodiversity: Understanding the Autism Spectrum. True North Psychology. https://www.truenorth-psychology.com/post/celebrating-neurodiversity-understanding-the-autism-spectrum
Books about Neurodiversity
"NeuroTribes: The Legacy of Autism and the Future of Neurodiversity" by Steve Silberman is a highly acclaimed book that explores the history, science, and politics of autism and the neurodiversity movement.
Different, Not Less: A Neurodivergent's Guide to Embracing Your True Self and Finding Your Happily Ever After -by Chloe Hayden
Divergent Mind: Thriving in a World That Wasn’t Designed For You - by Jenara Nerenberg
How Not to Fit In: An Unapologetic Guide to Navigating Autism and ADHD - by Jess Joy and Charlotte Mia
UNMASKED: The Ultimate Guide to ADHD, Autism and Neurodivergence - by Ellie Middleton
The Neurodivergent Friendly Workbook of DBT (Dialectical Behaviour Therapy) Skills - by Sonny Jane Wise
The Pocket Guide to Neurodiversity by Daniel Aherne
The Power of Different: The Link Between Disorder and Genius - by Gail Saltz
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