Late Diagnosis of Autism: Is an Official Diagnosis Worth It?
By Casey-Lee Flood, RN, HWNC-BC, NC-BC
Discovering that you might be Autistic can feel like a positive turning point in understanding yourself. However, pursuing an official diagnosis often comes with significant challenges and stigma. It will be necessary for you to have support during this process in case your mental health is impacted.
You might be wondering: is it worth the effort to get an official diagnosis? Can I even get this done? What kind of doctor do I need?
Being overwhelmed by these questions and wondering if you should pursue diagnosis is normal. I invite you to take a deep breath and then read on. We’ll explore why getting diagnosed can be hard, why some people find it valuable, and how to navigate the process if you choose to pursue it.
Keep in mind as you read that Autistic self-identification (self-diagnosis) can also be a safe way to explore accommodations and support. The hope is that there will be a time when accurate assessments are so available people will not need to self-identify. Until then, all Autistics and Neurodivergent (ND) individuals are welcome into our community.
Why It’s Hard to Get Diagnosed
You might not have been diagnosed earlier due to past stereotypes about autism. Historically, many assumed autism only looked a certain way, often overlooking individuals who masked their traits or didn’t fit the preconceived profile. This is particularly true for women, who on average have a 10-year delay compared to men when it comes to evaluation and diagnosis.
For adults, obtaining an autism diagnosis can be an uphill battle. Just remember to take your time and lean into the autism community. Social media support groups, local non-profits, Meetups, and Reddit are just a few ways to find adult Autistic support groups.
These are some of the common hurdles that you can expect to possibly encounter:
Expense
Autism evaluations can cost hundreds or even thousands of dollars, especially if your insurance doesn’t cover the testing. This financial barrier often deters people from seeking a diagnosis, particularly in countries like the United States where healthcare expenses are a significant burden. There are organizations like GRASP that have subsidized assessments available for ASD, ADHD, and OCD. They are a great resource for support groups as well.
Lack of Specialized Providers
Many professionals focus on diagnosing children and may lack experience with Autistic adults. Finding someone who understands how autism presents in adults—especially women, nonbinary people, and those from minority groups—can be difficult. Additionally, some regions have very few specialists, leading to long waiting lists and limited options.
Challenging Testing Process
Assessments often involve lengthy interviews, questionnaires, and observation. The process can feel overwhelming and intrusive. In this article, the National Autistic Society describes what people can expect during their assessments.
For individuals who already struggle with anxiety or executive functioning challenges, navigating this process can seem nearly impossible. I recommend allowing yourself time to look at different articles, and blogs describing other Autistic people's experiences, taking the quizzes before your visit, and packing comfort items, fidgets, snacks and drinks on the day of your assessment.
Why an Official Diagnosis is Important to Some
Despite the challenges, some find value in pursuing a formal diagnosis. See if any of these reasons resonate with you. Finding a motivating “why” behind your seeking a formal diagnosis may help you to persevere if the road ahead is rough.
- Validation: An official diagnosis can affirm your experiences and help you make sense of your life. Many individuals describe a sense of relief and self-understanding that comes with formally recognizing their traits.
- Access to support: Some accommodations at work or school require documentation, as do certain therapies or services. For instance, disability support offices can ask for some form of confirmation of disability from a provider, to provide extended testing time, assistive technology, or workplace modifications.
- Community and identity: Knowing you’re officially Autistic can deepen your connection to the Neurodivergent (ND) community. Feeling validated by others who share similar experiences can foster a sense of belonging and reduce feelings of isolation.
- Self-acceptance: For some, a diagnosis brings peace and clarity. Late-diagnosed Autistic individuals, like the author, often describe a sense of relief in finally understanding themselves. This recognition can pave the way for self-compassion and personal growth.
- Improved health care: Knowing you are Autistic might lead you to question your old mental health diagnoses or help you to recognize co-morbidities in yourself that are common for Autistic people. An autism diagnosis may therefore help you to advocate for the necessary testing, care, and follow-up regarding any comorbid conditions that are confirmed.
Additionally, knowing you are Autistic might help you frame past challenges differently, recognizing them as part of a broader narrative of resilience and adaptation.
Why Some Choose Self-Identification Instead
Self-identification is a valid way for Autistics to identify and accommodate themselves. As you consider whether or not to pursue an official autism spectrum disorder (ASD) diagnosis, here are some reasons to consider self-identification instead.
The Community Supports It
The adult Neurodiversity community is open to self-identified Autistic people. Many find solace and resources without an official label. Online forums, social media groups, and local meetups often welcome those who suspect they are Autistic without requiring proof.
Self-Identification is Validating
You don’t need a doctor to validate your lived experience. Understanding your traits and needs can guide self-advocacy and personal growth. Reflecting on how autism resonates with you can be empowering and transformative, even without a clinical label.
Focusing on practical strategies for thriving as an ND person can be immediately beneficial. Many resources, such as books, webinars, and workshops, are available to self-identified individuals without requiring a diagnosis.
Discrimination Prevents Equal Access to Diagnosis
Racism, sexism and ableism are rampant in modern Western medicine. Until these inequalities are addressed, and we have equitable, empathetic, and patient-centered healthcare for all, many individuals will not be able to get a diagnosis even if they want one.
How to Get Diagnosed if You Choose To
Both a formal diagnosis and self-identification are positive ways for Autistics to approach their identity, life and medical care. Neither is right or wrong, it is completely based on what you need, what resources you have access to and just what you want to do. If you decide to pursue an official diagnosis, here are the first 3 things you need to do:
Research and Prepare
- Learn about autism in adults, including how it presents across genders and cultures. Resources like books by Autistic authors and reputable websites can offer valuable insights.
- Keep a journal of your traits and experiences to share with a provider. Documenting examples of behaviors, challenges, and strengths can strengthen your case and guide the assessment process.
- Also try to ask a family member about your early childhood. Did you meet milestones on time, early or late? Any episodes of “tantrums”, inconsolable crying, or not responding to people. Avoiding physical touch or certain textures. Anything that could have been a sign of you being Autistic as a child would be good information to have.
Find a Specialist
- Look for psychologists or psychiatrists specializing in adult autism assessments. Online directories, such as those provided by autism organizations, can help you locate qualified professionals in your area.
- Ask for recommendations from local autism organizations or online ND communities. Peer advice can be invaluable in finding understanding and supportive clinicians.
Schedule and Self-Advocate
- Be clear about why you’re seeking a diagnosis. Preparing a concise explanation of your goals can help streamline conversations with providers.
- If the provider seems dismissive or uninformed, don’t hesitate to seek a second opinion. Advocacy may feel daunting, but persistence is often key to finding the right professional.
Two Diagnosis Experiences - Yours May Differ
Receiving an autism diagnosis as an adult is a deeply personal and often emotional process. Experiences can vary greatly so I do not want to miss something crucial or accidentally describe a visit that could be opposite of what you experience at your diagnostic visits. I will tell you about the two times I was assessed, and the differences should demonstrate the potential differences.
I was fortunate that my first assessment was covered by insurance—a privilege not everyone has. This initial evaluation, conducted by my treating psychologist, was brief, lasting only 45 minutes. She reviewed the DSM-5 criteria, took notes, and diagnosed me with ASD and inattentive-type ADHD.
While I appreciated her perspective, the process felt too quick, and I left with more questions than answers. I wanted a deeper understanding of how my neurodivergence shaped my experiences and what support might be most helpful moving forward.
Seeking a more thorough evaluation, I turned to GRASP, a nonprofit organization specializing in adult autism assessments. This second diagnostic experience was not covered by insurance, highlighting the disparity in access to comprehensive evaluations. It involved detailed self-guided psychiatric and IQ tests, followed by three 90-minute Zoom Telehealth sessions with a psychiatrist to explore my history in depth. In the final session, my husband and I reviewed the results with the psychiatrist, and I received a 14-page report detailing my diagnosis and test findings.
While I don’t personally like functioning labels, receiving a refined diagnosis of ASD Level 1 without intellectual disabilities helped me better understand where to seek support.
Both assessments brought up a lot of emotions, but I was especially grateful for the depth of the second one. It gave me not just a clearer diagnosis, but also practical tools—letters for work accommodations and medical providers—that empowered me to advocate for myself in meaningful ways.
Additional Resources for Self-Identified and Formally Diagnosed Autistic Individuals
Diagnosis and self-identification often cause many of us to be hyper-focused on ASD and how it impacts us individually. There are many ways to explore and embrace your identity further.
Joining ND-focused online communities or attending local meetups can provide opportunities for connection and learning. Books like "Unmasking Autism" by Dr. Devon Price or "NeuroTribes" by Steve Silberman can deepen your understanding of autism and its history.
Additionally, consider seeking therapy with a counselor familiar with ND experiences to gain tailored support.
Welcome to the Autism Club: You are Not Alone
Whether or not you pursue a formal diagnosis, your experiences and feelings are valid. The decision to get diagnosed is deeply personal and depends on your unique circumstances.
It’s essential to recognize that receiving a diagnosis doesn’t suddenly make the world more accessible or ensure immediate access to supportive services. Many individuals continue to face systemic barriers and advocacy challenges even after being diagnosed.
Furthermore, a diagnosis does not obligate you to disclose your autism to others. Disclosure is a personal choice and should be based on your comfort level and the potential benefits or risks in each situation. Ultimately, being Autistic is about understanding and embracing who you are—diagnosis or not.
The journey of self-discovery is valuable; diagnosis is just the beginning. If you decide to self-identify and/or get diagnosed. Please know you are amazing, and you do know your body and mind. What you experience matters and should be heard by the providers who are part of your care. If someone tells you it is all in your mind. Tell them enthusiastically that yes, your being Autistic is in your brain. Therefore, it is all in your head.
You deserve support and affirmation not just to get diagnosed, but to live your life in a way that you feel you are thriving. Living your best Autistic life.
About the author:
Casey-Lee Flood is a Registered Nurse, Holistic Nurse Coach, and Autistic, ADHDer, and Disabled human. She loves to research and write about neurodiversity in ways that help her community and bridge the gap between the community and the medical providers who care for us. Casey-Lee also loves her three cats, her husband, and reading fantasy novels.
Other articles by Casey-Lee Flood:
Autistic Mental Health: A Support Guide
You Are What You Eat: Holistic Health, Neurodivergence & the Gut
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