More and more adults are discovering their neurodivergence later in life, often after decades of feeling different without understanding why. This realization can bring profound relief, but also questions about whether pursuing a formal diagnosis is worthwhile.
Whether you’re contemplating this path for yourself or supporting someone who is, understanding the benefits and drawbacks can help navigate this deeply personal choice. But before we get to the pros and cons, let’s quickly cover why so many people have gotten to adulthood before realizing they might be autistic in the first place.
Why might autism have been missed in early life?
The historical understanding of autism has been dramatically skewed toward a very narrow and predominantly male presentation, leaving countless others unrecognized for decades. When diagnostic criteria were being developed, researchers primarily studied boys with very visible external traits, creating a template that many girls and those who have a more internal presentation didn’t match.
We now know that the traits manifest differently in autistic girls and autistic women (as well as some autistic men), often being more internalized than the stereotypical profile. Camouflaging—the conscious or unconscious masking of autistic traits—is particularly common among these groups.
Because of this masking and our earlier lack of knowledge, misdiagnosis in people who present less stereotypically has been rife. What we now recognize as autism was historically misdiagnosed as various personality disorders, anxiety, depression, and eating disorders, particularly in women. Although our knowledge has significantly improved, it’s still taking an awfully long time to filter down, with many in society and even in medical professions still behind on the latest research.
In addition, co-occurring conditions have frequently complicated identification. Before 2013, autism and ADHD could not be diagnosed together, but we now know that the co-occurrence between them (known as AuDHD) is actually very common. However, this combined profile can create a particularly confusing diagnostic picture, with traits from one sometimes obscuring the other. And yet again, not all health professionals have sufficient knowledge of this almost entirely different presentation.
But despite continued perpetuation of autism myths and misconceptions, the improved understanding of the diverse ways autism can present is beginning to filter down to the mainstream. And as such, many adults are now questioning whether they might be autistic. With this revelation, the question often gets asked, “Is it worth seeking a formal diagnosis at this late stage in my life?”
As with most things in life, there is no straightforward answer for that. In fact, there are about as many reasons people do pursue a diagnosis as reasons people don’t. But if you’re pondering the question yourself, here are some things to consider.
Why might someone benefit from a formal diagnosis?
The potential benefits of seeking an autism diagnosis later in life can be transformative for many people, offering both practical and emotional advantages. Here are some of them.
1. External validation can be powerful for some people.
For many people, impostor syndrome can be a significant barrier to self-acceptance. Despite overwhelming evidence of their autistic traits, they may continue questioning whether they’re “autistic enough” or whether they’re simply making excuses for personal failings.
The diagnostic process, when conducted by knowledgeable professionals, can provide the external confirmation needed to quiet these doubts. For many people, receiving validation from a professional can significantly reduce the psychological burden of constantly questioning one’s own experiences.
For many, this external validation releases them from years of self-blame. Decades of confusing experiences often suddenly make sense. Instead of seeing themselves as somehow failing at life, they recognize they’ve actually been working incredibly hard to navigate a world not designed for their neurology. This reframing can be powerfully healing, and for many, an external diagnosis is key to truly believing and accepting it.
What’s more, your loved ones may also take your needs more seriously following a formal diagnosis. While this ideally wouldn’t be necessary, many families find that the official nature of a diagnosis helps them better understand and accommodate their autistic family member.
In professional settings, colleagues and supervisors may be more supportive and compassionate if you have a formal diagnosis. This external validation can transform workplace experiences for many autistic adults.
2. Formal recognition can help with accommodations.
Whilst reasonable adjustments in most settings (such as education or the workplace) are meant to be based on need rather than diagnosis, the reality is that many people find they need a diagnosis to prove that need.
For those still in the workforce, reasonable accommodations might include modified lighting, noise-canceling headphones, flexible or working from home arrangements, or adjustments to communication methods.
In educational environments, these might include extended time for assignments, alternative assessment methods, or sensory-friendly learning spaces. These accommodations aren’t special treatment but essential tools that level the playing field.
Many countries have legislation that specifically protects the rights of autistic individuals to receive appropriate accommodations. Without a formal diagnosis, accessing these legal protections can be significantly more difficult.
When medical treatment becomes necessary, a diagnosis can help healthcare providers understand your sensory needs and communication style (although sadly, there is still a lot of misinformation about autism amongst health professionals). This understanding is particularly crucial during hospitalization or emergencies when stress levels are already elevated.
3. To better support a diagnosed child.
When a child receives an autism diagnosis, it often prompts parents to recognize similar traits in themselves. Pursuing your own diagnosis in this situation can benefit both you and your child in profound ways.
A parent’s journey through the assessment process and subsequent diagnosis can help children feel less isolated in their experience. Seeing that a parent shares similar traits and has been through the assessment process too, normalizes their differences and provides a model for navigating life as an autistic person. This shared neurotype can strengthen parent-child bonds through mutual understanding.
If the assessment process and diagnosis report are thorough and neuroaffirming, it can also equip parents with insights that benefit their parenting approach. When you understand your own sensory sensitivities or communication needs, you can better recognize and respond to similar patterns in your child.
Your diagnosis might additionally connect you with parent support groups specifically for autistic parents of autistic children, providing a community with others who truly understand the unique dynamics of these families.
4. To access autistic communities where diagnosis is required.
Depending on where you are, receiving a formal diagnosis can open doors to support groups that may not be open to you via self-identification alone. Finding your neurological tribe can be one of the most healing aspects of discovering you’re autistic, and many late-identified adults report that connecting with other autistic people provides a sense of belonging they’ve never before experienced.
The autism community offers spaces—both online and in-person—where stimming, direct communication, and passionate interests aren’t just tolerated but celebrated. These connections can transform a lifetime of feeling like an outsider into a newfound sense of community.
When you’ve spent decades trying to please neurotypical people at the expense of your authentic self, finding others who naturally understand your communication style can be revolutionary.
In the thought-provoking book “Neurotribes” by Steve Silberman, the importance of autistic community is highlighted as essential to wellbeing, not just a nice addition but a fundamental need for many autistic individuals.
5. They may want to advocate for the autistic community, and a diagnosis can add more weight to their voice.
After a lifetime of being misunderstood, many late-identified autistic people feel passionately about spreading awareness and acceptance of autism and the diverse ways it can present. They may want to advocate for better understanding and accommodations in various settings, and a formal diagnosis can significantly strengthen their position.
When you speak from the dual perspective of lived experience and clinical confirmation, certain audiences—particularly policy makers, healthcare systems, and educational institutions—may give your input greater consideration. This increased credibility, while perhaps unfair to self-identified individuals, represents a practical reality in many advocacy contexts.
For parents advocating for their autistic children, having their own diagnosis can powerfully counter dismissive attitudes they might encounter. The parent-advocate with a formal diagnosis can directly challenge assumptions about what autism “looks like” or what autistic people can achieve.
Your diagnosis might also open doors to participation in research studies, advisory boards, or formal consultation roles that specifically require clinical confirmation. These platforms can amplify advocacy efforts beyond what might otherwise be possible without a diagnosis.
So, why might someone choose not to pursue a diagnosis?
While diagnosis offers many benefits, there are equally valid reasons why some people decide it’s not the right path for them. Such as:
1. Self-identifying and learning about autism can be enough for many people.
The self-discovery journey itself often provides substantial benefits without formal confirmation. Many adults find that deep diving into autism research and identifying with the community brings the clarity and self-understanding they were seeking. In fact, for many of these people, autism becomes a special interest, and their knowledge on the subject far surpasses that of some of the less clued-up medical “experts”.
When someone reads firsthand accounts from autistic adults or participates in online forums, they often experience profound recognition that validates their experiences. This validation can occur whether or not a professional ever confirms it.
The wealth of resources available online means self-identified autistic adults can access substantial information about sensory regulation, executive functioning strategies, and communication approaches. Books by late-diagnosed autistic adults can offer insights that help people implement life-changing accommodations without a formal diagnosis.
For many, simply recognizing and accepting autism traits can begin shifting their focus to their own neurodivergent needs and boundaries rather than trying to fit into the neurotypical mold. This self-awareness often initiates healing regardless of diagnostic status.
2. Many undiagnosed autistic adults have already developed effective coping strategies throughout their lives.
By midlife and beyond, most people have established routines and environments that work for their unique neurology, often without realizing why these adaptations were necessary. These hard-won strategies may already be meeting their needs effectively.
You might have gravitated towards a career that naturally accommodates your sensory needs or communication style. For example, many autistic adults find themselves succeeding in professions with clear expectations, independent work, self-employment, or structured interactions that minimize the social difficulties they might otherwise face.
And if you’ve already retired, the workplace accommodations that might come with a diagnosis are likely to be much less relevant to your current life situation.
The home environments that older adults have created often reflect their sensory needs, from lighting choices to furniture arrangements to sound management. These accommodations, though perhaps never connected to autism, effectively support their neurological differences without any diagnosis required.
Furthermore, over the decades, many undiagnosed autistic people have developed social scripts and interaction strategies that help them navigate challenging situations. While these might have initially developed as unconscious and harmful masking techniques, they can become valuable skills that serve important functions when used by choice and for limited periods.
Without a need for formal accommodations and support, many self-identified autistic adults question whether a diagnosis would bring any added benefit. Especially when there can be emotional, physical, and financial costs to a formal diagnosis, which we’ll cover now.
3. They may have well-founded concerns around seeking referral and assessment.
The diagnostic process itself can be fraught with outdated understanding and biases that make accurate assessment difficult. Many adults report being dismissed by professionals who still lack understanding of the different ways in which autism can present.
I’ve heard so many people who present non-stereotypically report that they were immediately dismissed when requesting a referral, with phrases such as “You can’t be autistic because you’re married/have a job/have a degree” or “You make too much eye contact to be autistic” being used as justification. Worse still, these misconceptions remain frustratingly common even among some supposed specialists who carry out the assessments.
The psychological vulnerability required to request a referral and go through evaluation can be particularly challenging for those who’ve experienced previous medical trauma or dismissal.
Unfortunately, many autistic people, particularly women, will have experienced significant medical gaslighting and misunderstanding throughout their lifetime because of their gender and neurodivergence. Research shows that autistic people face significant barriers to accessing healthcare, and this is made even worse when you’re not yet aware of your neurodivergence, because you assume it’s a personal failure rather than a lack of accommodation. Therefore, opening yourself up to the potential rejection of your lived experience poses legitimate emotional risks.
It’s not surprising, then, that where means allow it, many people consider private assessment with a reputable clinician known for their knowledge of diverse autism presentations. However, even this is not without issue. Those considering this option may worry that the substantial cost of an assessment makes the assessor more compelled (either consciously or unconsciously) to give a diagnosis. Whether this is true or not, it can weigh heavily on the minds of those already struggling with impostor syndrome.
And indeed, those who have paid privately and received a diagnosis do often report hearing comments such as, “Well, anyone can get a diagnosis if they pay for it.”
For parents seeking a diagnosis for themselves, there is often an added layer of worry: judgment regarding their parenting abilities from medical professionals and assessors, particularly if their child is also autistic. This concern is valid given the historical tendency to blame parents for their children’s developmental differences.
With all this to consider, it’s no wonder many people opt out of pursuing a diagnosis.
4. Practical concerns regarding the assessment, e.g., wait times, cost, travel, and form filling.
The practical barriers to diagnosis can be prohibitive for many adults. Public health systems often have waiting lists stretching years for adult autism assessments, while private evaluations can cost thousands.
In the USA, when insurance doesn’t cover the assessment—which is common for adults—the financial burden falls entirely on the individual. This expense may be difficult to justify, particularly for retirees on fixed incomes or those already struggling with the cost of living or other healthcare costs.
The time and mental investment required for an assessment can also be substantial, creating potentially challenging barriers for those who already have executive functioning differences.
Comprehensive assessments typically involve multiple appointments and lengthy questionnaires, and often, informant questionnaires and/or interviews with family members are requested to get a picture of the traits present in childhood. Many people considering assessment worry about having to ask a parent to give a childhood history, not because the traits weren’t present in childhood, but because of missing or selective recall.
Some parents (or siblings if the parents are no longer alive) can be dismissive about the process because of a lack of knowledge about autism. Others may not see the family member’s traits as being indicative of autism because of their own, as yet unidentified autism. They see their relative’s autistic traits as the “norm” without realizing they are only the “autistic norm”, saying things like “But I do that too, doesn’t everyone?”
Then there are family members who may acknowledge their neurological difference but take the “well, I managed without a label and support, so why can’t you?” approach. And finally, those who are entirely disbelieving that it could be autism because to accept that, would mean they somehow failed as parents (either through not noticing or through misplaced parent blaming).
For many, this is enough to put them off even considering assessment.
A person’s geographical location may further complicate access, as qualified professionals who understand the diverse ways autism can present in adults aren’t evenly distributed. Some people may need to travel significant distances, adding to both cost and stress.
For parents already managing their children’s healthcare needs, finding the additional mental, physical, and financial resources for their own assessment can feel impossible. The priority naturally goes to supporting their child, leaving little bandwidth for pursuing their own diagnosis.
5. There are often concerns about stigma or discrimination.
Despite increasing awareness and acceptance, autism still carries significant stigma that can impact how others perceive and interact with diagnosed individuals. This concern isn’t merely theoretical but based on documented discrimination.
Unfortunately, it’s worth considering whether your professional reputation might be affected if colleagues or superiors begin viewing your work through the lens of your diagnosis rather than your demonstrated abilities. Workplace discrimination, while illegal, remains a reality for many autistic adults who disclose their diagnosis.
For those who’ve established themselves in their communities or professional fields, there can be legitimate fear that relationships will change once others view them through the lens of autism. The desire to maintain these connections without added complications is understandable.
The privacy implications of a formal diagnosis can also be concerning. Once documented in medical records, the diagnosis becomes part of your permanent health history, potentially affecting insurance rates, healthcare decisions, and even immigration to certain countries. As we mentioned, parents may fear that a diagnosis could be unfairly used against them at some point.
In certain professions where fitness-to-practice assessments are common, an autism diagnosis might trigger unnecessary scrutiny. This is particularly relevant in fields like law, medicine, or aviation, where neurological differences may be poorly understood.
Finally, the internalized stigma that many people carry after decades of disorder-based messaging about autism as something to be “fixed” can also make accepting a diagnosis emotionally challenging. It’s an unfortunate reality that society’s negative perceptions of autism can become incorporated into one’s self-image.
6. Many online communities welcome those who self-identify without the need for diagnosis.
The adult autistic community has increasingly embraced self-identification as valid, recognizing the numerous barriers to formal diagnosis. This acceptance provides the benefit of community, such as support, strategies, and validation, without requiring official confirmation.
In these welcoming spaces, your lived experience is typically considered sufficient evidence of your neurotype. When you join these communities, you’ll often find that the distinction between diagnosed and self-identified members quickly becomes irrelevant as conversations focus on shared experiences and mutual support.
Your participation in autism communities as a self-identified person also helps normalize this path for others who may be questioning whether they “qualify” to claim their autistic identity.
The diversity within these communities—including people at various life stages and with different presentation styles—provides valuable perspectives that can help contextualize your own experiences regardless of diagnostic status.
7. Diagnosis doesn’t guarantee understanding or acceptance from others.
Even with formal documentation, many autistic adults find that others still question or dismiss their diagnosis. When disclosing it, many hear comments like, “Well, everyone seems to be autistic these days,” that imply it’s an over diagnosed fashion statement. (And yes, autism diagnoses have increased, but not for the reasons most people think.) This invalidation makes some question whether going through the assessment process is worthwhile.
When family members have long-established perceptions of you, they may resist incorporating new information that challenges these views. Phrases like “but you don’t seem autistic” remain frustratingly common even after diagnosis.
For parents who receive their diagnosis after their child’s, there can be particularly complex dynamics as extended family may accept the child’s diagnosis while questioning the parent’s.
Furthermore, the misconception that autism is a childhood condition still persists among many people, leading to skepticism when someone receives a diagnosis in adulthood. This disbelief can come from friends, family, and even some healthcare providers.
Then there is the ongoing issue of deciding who to disclose an autism diagnosis to, when to tell them, and how much to explain. This additional social calculation can be exhausting, particularly for those already experiencing significant challenges due to their neurodivergence or common co-occurring conditions such as chronic pain, hypermobility, fatigue, anxiety, and depression.
The variation in how different professionals understand autism means that even with a diagnosis, you may encounter healthcare providers who don’t recognize how your autism affects your needs. Despite advances in our knowledge and acceptance of autism, research continually shows that autistic people have poorer experiences of healthcare than neurotypical people.
So yes, whilst a diagnosis may open some doors to understanding and support, it’s by no means a guarantee. In reality, a lot rests on the awareness and compassion of the people you disclose your diagnosis to, rather than the diagnosis itself.
Final thoughts…
The decision to pursue an autism diagnosis in midlife or beyond remains deeply personal, with no universal “right answer.” What matters most is finding the path that supports your well-being and self-understanding.
Many people find that, regardless of formal diagnosis, learning about autism and connecting with others who share similar experiences provides tremendous value. The self-knowledge gained through this exploration often leads to more effective self-accommodation and greater self-compassion.
The diagnostic landscape continues evolving, with growing recognition of diverse autism presentations. While today’s process remains imperfect, the understanding of how autism presents across genders and throughout the lifespan improves each year.
For those still extensively questioning their autistic identity, keep this in mind: if you’ve spent months researching autism and consistently recognizing yourself in the descriptions, that itself is significant information. Most neurotypical people don’t devote extensive time to questioning whether they might be autistic or deeply relating to autistic experiences.
Whether you pursue formal diagnosis or embrace self-identification, the most valuable outcome is living more authentically with a greater understanding of your unique neurological makeup. This knowledge, however you acquire it, can transform how you navigate relationships, environments, and life decisions—honoring your neurodivergent reality rather than continuing to strain against it.
