Why Many Adults Receive a Late Autism Diagnosis, And What to Do Next

Getting diagnosed with autism later in life, whether it’s in your 20s or 40s or even your 60s, can be a total game-changer. It can impact your entire sense of identity and how you interact with the world and others. It can also bring a profound feeling of relief while answering many questions, including: why did it take so long to figure this out? 

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For Tobey, 41, the turning point following his clinical diagnosis was a deep sense of self-acceptance. “Once I stopped burning energy on hiding and masking, I was able to redirect that effort into becoming my true self,” he says. “The difference has been huge.”

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Tobey is far from the only adult who spent decades living with undiagnosed autism. In fact, the rate of autism in adults has been steadily increasing. Between 2011 and 2022, the autism diagnosis rate increased by 450% among 26-to 34-year-olds alone.

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Today, the Centers for Disease Control and Prevention (CDC) estimates that one in 45 adults is autistic, and even more are likely undiagnosed. This rise is due to the improved understanding of the condition (and acknowledgement that autism is a true spectrum, rather than a collection of specific traits) thus leading to updated diagnostic criteria.

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Whether you’re newly diagnosed yourself or are considering getting an adult autism evaluation, you probably have a lot of questions. In this article, we’ll provide a neurodivergent-affirming breakdown of why many adults receive a late autism diagnosis, and we’ll unpack both the challenges and benefits, as well as how to access support.

When autism is diagnosed in adulthood, it doesn’t mean that someone only developed the signs of autism later in life. In most cases, they had been living with undiagnosed autism since childhood, and belong to what experts call the “lost generation.” “These adults missed out on services, and therefore often experience pretty significant challenges, including mental health conditions,” says Jackie Shinall, PsyD, head of reliability and quality assurance at Prosper Health. 

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There are many reasons for lost generation autism. In addition to a previous lack of awareness of autism in adults, outdated diagnostic criteria allowed even more people to slip through the cracks. 

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In the past, autism was primarily viewed through the lens of the “classic” presentation (the stereotypical autistic male you’re picturing), so more subtle signs were often missed. “In some cases, this relates to the broadening of the autism spectrum, as there are some individuals who would not have met the diagnostic criteria in the past, but now do meet the criteria as it has evolved and our understanding of autism continues to improve,” says Heather Flynn, PhD, a licensed clinical psychologist specializing in autism assessments for individuals of all ages.

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Other factors include: 

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• Differences in presentation across genders: Autism presents differently in women and people who are assigned female at birth (AFAB). “It was initially diagnosed mostly in boys, and the diagnostic criteria was largely understood in how it presented in boys,” Dr. Shinall explains.
• Masking: Many children learn how to “mask” or camouflage autistic traits by mirroring or mimicking peers. 
• Good behavior and grades: When children are performing well academically and not acting out in class, it’s often assumed that they aren’t autistic, despite the struggles they experience internally
• Cultural and socioeconomic shifts: Because the initial autism diagnostic criteria was developed largely based on Caucasian boys, there has been a poor understanding of how it presents across different cultures.
• ADHD diagnosis: Prior to the release of the DSM-5 in 2013, doctors were unable to diagnose autism and ADHD simultaneously, and had to choose between one or the other—even if the person clearly had both conditions.
• Wider acceptance: While prior stigma may have prevented some people from seeking a diagnosis for themselves or their child, more people now recognize that undiagnosed autism in older adults exists.

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Living with undiagnosed autism as an adult made life challenging for Tobey, who was diagnosed at age 36. “I was successful in my career, but it always came with an invisible tax,” he says. “Every interaction felt like a performance. I had to script, rehearse, mask, and then recover in private.” 

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Similarly, living with undiagnosed autism led Aaron, 34, to constantly minimize and question himself. “My natural reactions to things felt incorrect, my feelings didn’t feel valid, and I spent all my energy suppressing myself,” he says. 

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Why is autism often missed in women?

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Those who were AFAB with autism often go years undiagnosed or misdiagnosed. One major reason for this is because autism presents differently in women, and the initial diagnostic criteria and studies were conducted with white boys. 

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Other reasons why women may have a missed autism diagnosis include:

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• Masking: Women tend to be better able to mimic or imitate others’ behavior and thus may “pass” more easily for neurotypical. 
• Different interests: Autistic men tend to have strong interest in one particular subject. Conversely, autistic women often have special interests similar to their peers, but approached with more intensity. 
• Dismissed as shy: Women and girls tend to be written off as “just being shy” rather than acknowledging their differences in social communication. 
• More social pressure: “Social expectations can also lead to more girls internalizing feelings of distress, confusion, etc. because it was more common for males to act out,” Dr. Shinall says.

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Why is autism missed in LGBTQIA+ individuals?

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Like other autistic adults, LGBTQIA+ individuals may receive a late diagnosis. “I can see people getting overlooked for ‘feeling different’ from others believing it was due to gender dysphoria or sexuality when it was also due to autism,” Dr. Shinall says. 

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Recent research has shown that autistic individuals are more likely to identify as LGBTQIA+ than the neurotypical population, but the diagnosis is complicated by measurement tools being less sensitive to the intersection of gender identity, sexual orientation and race.

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According to a 2020 study published in the Journal of Autism and Developmental Disorders, LGBTQIA+ individuals indicated that they “had significantly higher rates of mental illness, poor physical health days per month, and smoking compared to straight, cisgender respondents with [autism spectrum disorder].” 

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Why is autism often missed in BIPOC Individuals?

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Autism is missed even more frequently in Black, Indigenous, and People of Color (BIPOC) individuals for several reasons:

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• Diagnostic criteria: The diagnostic criteria for autism was developed largely based on white males. As a result, differences in social-communication or behaviors are attributed to cultural differences rather than seeing the developmental difference (i.e. autism). 
• Misdiagnosis: Autism in BIPOC populations is often misdiagnosed and confused with other conditions. According to a 2025 study published in BMJ Quality & Safety, “culturally inequivalent assessment measures” can cause misdiagnosis and delayed diagnosis.
• Fewer childhood diagnoses: BIPOC children are much less likely to receive an autism diagnosis as compared to their white peers. The BIPOC children who are diagnosed with autism may have limited access to support services.
• Cultural differences: Some misdiagnoses are the result of language barriers and cultural differences. 
• Lack of research: BIPOC individuals are often underrepresented in autism research. Additionally, there hasn’t been much of a conversation around the impact of racial and ethnic discrimination on BIPOC with autism.

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Why has there been a rise in adult autism diagnoses?

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There are several reasons why adult autism diagnoses have increased. First, there has been a shift from autism only being associated with children, to a greater awareness that people can be diagnosed with autism as adults. Along with that, an autism diagnosis isn’t as stigmatized as it was in the past. 

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Over the years, the diagnostic criteria for autism has become broader—especially for those with more subtle presentations. Finally, there is now increased awareness of masking and camouflaging: people intentionally engaging in behaviors to appear neurotypical and attempt to hide or suppress autism traits. 

Additionally, there are now more providers, like Prosper Health, that specialize in assessing and diagnosing autism in adults. Additionally, Prosper Health has more screening tools and measures and assessment instruments for autistic adults—and autism in general. 

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What’s considered a late autism diagnosis?

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The average age of an autism diagnosis is between four and five years old. To our knowledge, there are no data indicating the average age of adult autism diagnosis. “Within the adult population alone, I frequently see people in their early to mid 20s through their 50s, and I have seen some in their 60s,” Dr. Shinall says. According to a 2019 study published in Health Psychology and Behavioral Medicine, adults over the age of 50 are increasingly receiving an autism diagnosis as an adult. 

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While there is also no consensus on what’s considered a “late” autism diagnosis, many professionals include those that take place when someone is 18 or older. “Personally, I consider 18 years of age a late diagnosis because their diagnosis went missed throughout their entire childhood,” Dr. Shinall says.

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Being diagnosed with autism as an adult can be a very emotional experience. Dr. Shinall and Dr. Flynn share that people are likely to feel:

• Relief: It’s the feeling of knowing your concerns and experiences are being taken seriously, and there can be clear steps to accessing support.
• Validation: Finally feeling that there’s not something “wrong” with you, and understanding that your brain operates differently.
• Grief: Experiencing grief for “what could have been,” had you gotten the diagnosis when you were younger.
• Anger: Anger that your diagnosis wasn’t provided sooner and that people in your life didn’t realize you were struggling.
• Shame: A sense of shame related to feelings of self-doubt, worthlessness, or inadequacy connected to your perception of your autistic traits.

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Tobey’s adult autism diagnosis brought a mix of relief and grief. “Relief because I finally understood myself,” he explains. “Grief because I looked back on decades of unnecessary struggle. Over time the relief has taken over, but the grief is still there in moments.”

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When Jessica, 37, was diagnosed with autism last year, she felt relieved more than anything. “I had been considering this for so long that I almost felt crazy and was stressed about what the other possibilities could be if this wasn't autism,” she explains. “So when that was the diagnosis, I was so relieved and felt like things just made way more sense.”

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What is an autism shame spiral? 

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Though it’s not an official medical term used by clinicians, an autism shame spiral “is basically a cycle of negative self-perceptions, self-doubt, and feelings of worthlessness or inadequacy that can have significant impact on an autistic individual’s mental health, including experiences of anxiety and depression, that recur over time,” Dr. Flynn says. 

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When people feel shame about something, they may avoid or withdraw from that thing, then feel shame for avoiding it. “For example, someone who has had experience of accidentally saying upsetting things to others may then avoid going to an event where they would have to talk to other people,” Dr. Shinall explains. “They then feel bad about avoiding it and continue to feel bad that they sometimes say upsetting things.” 

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Challenges of receiving a late autism diagnosis

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There are consequences of a late autism diagnosis, including both challenges and benefits. After living with undiagnosed autism for most of your life, finally getting a diagnosis may be a relief, but it can also come with some obstacles. These include:

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Practical barriers

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The greatest barriers are access to services and cost. “There are very few providers who specialize in adult autism assessment, and even fewer that accept insurance,” Dr. Shinall explains. Out-of-pocket costs for adult autism screenings and subsequent evaluations can cost more than $5,000 in some places in the country, which is not realistic for many people, she notes. “Insurance covering adult autism assessments is new within the past few years, so companies are limited in which insurances are accepted,” she says. 

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The two greatest barriers Aaron faced when getting his autism diagnosis were time and money. “I self-diagnosed around July or August 2020 when a lot of services were still affected by Covid,” he explains. “I had called a clinic about scheduling, but they had a waitlist and it never happened. I didn’t pursue it further since the money was never there even with insurance.” He was finally able to get a clinical diagnosis this year.

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Coping with trauma or misdiagnosis

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Many adults seeking an autism diagnosis as an adult have several other prior diagnoses, and in some cases, misdiagnoses. There is also an incredibly high-rate of trauma experienced by autistic children and adults, including some with trauma associated with missing an autism diagnosis. 

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“I agree with the statement that ‘society doesn’t produce untraumatized autistic people and I know a few people who have complex PTSD (CPTSD) who attribute it to their autistic experience,” Aaron says. He says that he has experienced trauma himself, largely from his sensory difficulties and being unaccommodated.

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Struggles with “I’m autistic, now what?” questions

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People may also wonder, “I’m autistic, now what?” In fact, it’s a question that many adults ask at the end of their feedback session, because they may feel overwhelmed and uncertain what to do after their autism diagnosis, Dr. Shinall says. 

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“I often recommend that adults first take some time to process and reflect before immediately jumping into what they should do next,” she explains. “Following this, consider working with a neurodivergent-affirming therapist who can help identify and work from a strengths-based approach, while helping the adult better understand themselves.”

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While some adults have wondered whether seeking a diagnosis is worth it, there are clear benefits of getting diagnosed with autism regardless of your age. Some of these include:

Self-acceptance and reframing the past

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Adults diagnosed with autism have the unique opportunity to reframe their negative past experiences and be more accepting of their autism diagnosis and themselves. 

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“Many adults report a lifelong feeling of being ‘different’ and even feeling like an ‘alien’ in their own family,” Dr. Shinall says. “Getting an autism diagnosis allows them to understand that they do indeed belong and that their brain is just wired a little differently.” 

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The diagnosis can also provide a sense of identity and self-acceptance, and may help reframe past experiences for “someone who has perceived a mismatch between what their life is like and how they think it should be,” Dr. Flynn says. 

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Finally receiving an autism diagnosis as an adult gave Tobey a framework and language he had been missing my whole life. “Suddenly I wasn’t broken, I was autistic,” he says. “That shift opened doors to community, books, resources, and most importantly self-acceptance.” It also shifted his identity. “I went from seeing myself as someone constantly failing to fit in, to recognizing that I had been succeeding in spite of huge invisible challenges,” he says.

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Finding community and connection

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Thanks to the internet and social media, there are now more ways for autistic adults to find community and connection than ever before. For example, online groups can be a source of support and resources for adults with newly diagnosed autism as well as those who have knowingly lived with the condition for years. They can be especially useful for people in the process of accepting their autism diagnosis.

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Jessica has found this to be true. “I joined some neurodivergent business owners’ groups on Facebook and that has been super helpful,” she says. “Even if we can't come up with a solution, it's so nice to know that I'm not the only one trying to navigate the world like this and having these types of situations pop up.”

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Access to accommodations and tailored support

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Getting an autism diagnosis as an adult allows someone who may be struggling with various aspects of their life to get the help they need. “For example, if someone finds that they cannot communicate their feelings very well and they have a hard time knowing how their partner is feeling, this sometimes leads to rifts in relationships,” Dr. Shinall explains. 

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The most significant benefit Aaron received from his diagnosis was understanding what his experience is and having a name for all of it. “Learning about executive dysfunction, demand avoidance, time blindness, to name a few, has completely reshaped how I see myself.”

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Another example is workplace accommodations. These can vary widely, but some include sensory accommodations (e.g., lower lighting, reduced sound, breaks from busy/loud spaces), having a separate/independent office, and having a flexible or different schedule (e.g. quiet time to work on certain things before others arrive; or ability to work from home some days). 

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There can also be modifications made to therapy to make it more effective for autistic people and offer more tailored support.

So, what happens after an autism diagnosis? There are a number of next steps you can take to get the support you need:

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• Education: Turn to trusted sources of information to learn more about living with autism. “At Prosper Health, we offer a post-diagnostic education group for newly diagnosed adults to help answer questions and discuss the ‘what now,’” Dr. Shinall says.
• Therapy: “Looking for a neurodivergent-affirming therapist would be a great first step,” Dr. Shinall says.
• Support networks: Online and community support groups can help you connect with other autistic people so you can share experiences and resources. Some groups specialize in newly diagnosed autism in adults.

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What are some autism self-advocacy strategies?

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It’s important that autistic people learn to be their own advocate, identify their needs, and ensure their needs are met. Being a self-advocate means:

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• Telling people about your thoughts and feelings  
• Asking for what you need and want
• Knowing your rights and speaking up for yourself
• Making decisions that affect your life 
• Taking responsibility for the choices you make

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To identify your needs and how best to meet them, it may help to ask yourself these questions: 

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• What is the issue?
• What is the negative impact on you and others?
• What is the desired resolution?
• How can it be a win not only for yourself but for others involved?
• What is your best alternative?
• What are your non-negotiables? 

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Jessica stresses that it’s important not to look at an autism diagnosis as a death sentence, but rather, to use it to your advantage. “There are a lot of really cool things that come with being autistic,” she says. “Not everything, but there are definitely skills that other folks don't have.”

There are ways to advocate for yourself in various settings:

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Workplace

• Identifying challenging aspects of your work environment or schedule, their impact on your work performance
• Requesting accommodations that would make doing your job easier

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Relationships

• Setting healthy boundaries with loved ones, including saying no to things you’re not comfortable with
• Letting your loved ones know when something is a challenge for you, and how to resolve it

Healthcare

• Speaking up about autism and how it affects your health in doctor’s appointments

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Bringing a support person who can listen to what the doctor says and help you take notes and communicate, when necessary

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Resources and supports for autistic adults

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The good news is that there’s help for newly diagnosed autistic adults. For starters, there are several U.S.-based autism organizations that provide resources, supports, and ways to take action to advocate for yourself and others. These include:

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• Autism Self-Advocacy Network (ASAN)
• Autistic Women & Nonbinary Network (AWN)
• Association for Autism and Neurodiversity (AANE)
• Autism Society of America 
• The Color of Autism Foundation
• Black Autism Support Society

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There are also online peer groups, where you can connect with other autistic people, including those who were diagnosed with autism as an adult, anywhere in the world. Some include: 

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• Global and Regional Autism Spectrum Partnership (GRASP) autism support groups
• AANE social groups
• Ernie Els Center of Excellence’s Spoken Wheel Society
• Pay What You Can Virtual Peer Support Groups
• Autism Women’s Group

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You can also search for local community groups for autistic people that may offer online and/or in-person meetups. 

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How Prosper Health can help

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Whether you're a recently diagnosed autistic adult or are in the process of seeking a diagnosis, Prosper Health can help.

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Diagnosis: Prosper Health can guide you through your diagnostic journey via telehealth autism assessments from providers who specialize in working with autistic adults.

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Therapy: Prosper Health's knowledgeable and compassionate clinicians offer tailored therapy to help you navigate challenges common among autistic adults. This includes coping with the emotional impact of receiving a late autism diagnosis.

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Therapy and diagnosis with Prosper Health is 100% virtual and is covered by insurance in most cases. If you’re ready to get started, get in touch to be connected with a neurodiversity-affirming clinician within days.

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Remember: a late diagnosis is valid and empowering.

What happens if you get diagnosed with autism later in life?

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Getting an autism diagnosis later in life begins with a comprehensive assessment conducted by a qualified clinician to determine whether someone meets the criteria for autism. If they do, they’ll receive an official diagnosis. Then, the clinician typically discusses possible treatments or therapies for the person, as well as how to access services, resources, and supports.

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Why are women diagnosed with autism later in life?

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Women are often diagnosed with autism later in life because autism presents differently in women, and the diagnostic criteria for the condition was developed to assess white males. Additionally, women are socially conditioned to mask or camouflage their symptoms, in order to fit into neurotypical society. Autistic women also tend to be written off as “just being shy.” 

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What happens after an autism diagnosis?

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After a qualified clinician administers an autism assessment and determines someone has autism, they will discuss treatment options and the resources and services available. The newly diagnosed autistic person may also want to join online or community support groups to make connections with other autistic people.

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What are the benefits of getting diagnosed with autism as an adult?

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The sooner you get diagnosed with autism, the sooner you can start to get the help and resources you need in order to thrive. It also helps with self-acceptance and reframing the past, and gives you the opportunity to find the supports you need.

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