Written by Dr Sara Tookey
As a psychologist with personal 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. In this article, we'll explore the benefits and challenges of seeking a diagnosis, when you might not need one, and how to approach the decision from a neurodivergent perspective.
The Value of Getting an ADHD or Autism Diagnosis in Adulthood
Many adults seek an ADHD or autism assessment because they feel 'different' 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
Chronic disorganisation, procrastination, and time management issues
Impulsivity in decision-making and actions
Emotional dysregulation and rejection sensitivity
Hyperactivity or restlessness (which can also be internal - may look like difficulty shutting off or an over-active mind)
For Autism:
Challenges with social communication and interaction
Difficulty understanding and expressing emotions
Sensory sensitivities or differences in processing sensory information
Need for routine and difficulty with unexpected changes
Intense focus on specific interests or topics
Some challenges can overlap or co-occur in both conditions, 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 and how it relates to autism, 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
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)
However, diagnostic criteria are evolving and may not capture everyone's experiences. Your lived experience is valid, regardless of whether it fits neatly into current diagnostic categories.
Challenges in Obtaining a Diagnosis
While a professional diagnosis can be beneficial, it's important to recognise the hurdles many face in this process. Research has shown that fear of not being believed by healthcare professionals is a significant barrier for adults seeking diagnosis (Lewis, 2017). The diagnostic criteria and process have historically focused on young, white, cisgender males, potentially excluding many others who don't fit this narrow profile. These systemic issues can make the path to diagnosis lengthy, stressful, and sometimes traumatic.
Additionally, professional diagnosis can be inaccessible due to high costs, long waiting times, and systemic biases in healthcare. These obstacles disproportionately affect marginalised groups, including people of colour, LGBTQIA+ individuals, and those with co-occurring disabilities or chronic health conditions. For many, self-diagnosis may be the only viable option.
When You Might Not Need a Diagnosis
It's important to recognise that identifying as neurodivergent and benefiting from accommodations doesn't always require a formal diagnosis. You might not need one 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 as an integral part of your personality
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.
For ADHD, 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.
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).
Ruling Out Other Conditions:
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
For Autism-like symptoms:
Social anxiety disorder
Obsessive-compulsive disorder (OCD)
Schizoid personality disorder
Language disorders
Sensory processing disorders
Research by Kentrou and collegues (2019) found that conditions such as anxiety and mood disorders can present with symptoms that overlap with autism, potentially leading to misdiagnosis. Similarly, a study by Katzman and collegues (2017) highlighted how anxiety disorders can mimic ADHD symptoms in adults.
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.
It's worth noting that 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. While professional assessment is ideal, self-diagnosis shouldn't be dismissed, especially given the barriers many face in accessing formal diagnosis.
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 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 instance:
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 cognitive 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 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, neurodivergence is a variation in brain structure and function, not inherently dysfunctional. Whether you choose to seek a formal diagnosis or not, understanding and embracing your unique cognitive style can lead to improved self-acceptance and life satisfaction.
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, taking into account the distinct characteristics and needs associated with each neurotype.
It’s important to remember also that whether diagnosed or not, neurodivergent individuals often face systemic barriers and vulnerabilities. Increasing understanding and acceptance in society is crucial. This involves not just recognising neurodivergent traits, but actively working to create inclusive environments where neurodivergent persons can thrive.
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:
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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References
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Cooper K, Smith L, Russell A. Social identity, self-esteem, and mental health in autism. Eur J Soc Psychol. 2017;47:844–54. https://doi.org/10.1002/ejsp.2297.
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