- Undiagnosed adults with autism lead challenging lives.
- Proper diagnosis and assessment of adults with autism is critical for mental health.
- Many adults with autism don't have access to formal diagnosis methods.
When you live your entire life with undiagnosed autism, you live with a constant sense of wrongness. It is hard to put your finger on what it is, but you know something is "wrong" with you. This feeling can manifest in many ways but for many of my clients, it is as a consistent sense of confusion. Before they know they have autism, most of my clients live with a sense that they are failures. An insidious imposter syndrome is consistent even among those of us who can appear to be successful. Most of us feel that we are hated and bad. We feel that we can never really understand what we are doing so wrong, or why. We feel alien and isolated in a world of people who seem to move easily into friendships, relationships, and jobs.
One visitor to my Neurodiverse Women page, Jenna, summed it up beautifully. She wrote that living with undiagnosed autism was difficult because she struggled with "misunderstanding myself and being so misunderstood by others that I felt like I was either bad at life or just a bad person; no matter how hard I tried it was always confusing and exhausting and traumatizing. It’s like doing a puzzle in the dark with the pieces upside-down and no reference picture while everyone else gets light, and a reference picture and the pieces flipped upright…but all along you think they’re doing it the way you are and you’re just incompetent.”
Another woman, Hannah Mae, wrote that the hardest part of living with undiagnosed autism was "life in general. Feeling like an alien trying to find where you fit but never quite fitting anywhere. Being seen as vulnerable and being targeted by abusive friends and partners. Getting to the point of feeling like you can't carry on because you don't know what is 'wrong' with you. Being told by the people closest to you to 'just be normal' but never fitting in to their ideal of 'normal' no matter how hard you try.”
For me, my sense of failure came from numerous disastrous interactions. I had a doctor at a clinic write “ding dong the witch is dead” on my office door when I left because he found me so off-putting and hated me so profoundly. I had an old friend call me “pretentious” and a “know-it-all” and tell me that no one could bear to be around me. The worst part of this constant chain of experiences is that I go into all these interactions trying my hardest to be normal and likable, but I fail even when I try my hardest.
Other people with autism list other problems as integral to late diagnosis. A friend of mine has had difficulty holding jobs for more than two years. She loves her work but the social exhaustion that is a constant bedfellow to most office jobs pushes her to the precipice of burnout. She isn’t alone: Most adults with autism struggle obtaining and maintaining employment and in a world in which success is measured by money and career it is hard not to see yourself as a failure.
Research supports my anecdotal evidence. According to Howlin and Moss (2012), adults with autism with “normal or higher IQs are significantly disadvantaged regarding employment, social relationships, physical and mental health, and quality of life.” According to Stagg and Belcher (2019), their results showed that adults with undiagnosed autism “reported behaviors in their childhood and growing up they felt isolated and alien.” Most of the adults with autism were misdiagnosed with depression, anxiety, bipolar disorder, borderline personality disorder, or other disorders. However, according to their research, receiving a diagnosis helped adults move toward self-love and acceptance.
Living with undiagnosed autism spectrum disorder can be crippling. But there can be light at the end of this tunnel. For me, getting diagnosed changed everything. It gave me an explanation for my so-called failures. I don’t even really think of them as failures anymore. I think of them as impossible puzzles that I didn’t have the resources to solve. I tell people I have autism now and people are more compassionate and understanding. If the research and the lived experiences of people with autism both show that quality of life for adults with autism improves with diagnosis, why don’t we focus on this in the discussion of autism? Instead of only focusing on very young children with the worst behavioral issues, why not focus on making diagnosis and intervention more available for all ages?
According to Leedham, Thompson, Smith, and Freeth’s (Autism, 2019) findings, late diagnosis for women with autism facilitates the transition from “being self-critical to self-compassionate, coupled with an increased sense of agency.” According to Stagg and Belcher (2019), adults with autism find self-compassion with diagnosis. Quality of Life improves.
Getting an “official diagnosis” is a challenge for most people who think they have autism, however. There are many obstacles to getting an official diagnosis as an adult. Many clinicians do not want to listen to adults who self-diagnose or follow “tiktok trends." Their internal biases make getting a referral for assessment difficult. Other clinicians frequently say things like, “You don’t seem autistic to me” or “I don’t see how diagnosis would help you. We should focus on the positive.” The cost of assessment can be impossible for many. Lastly, many clinics and clinicians who provide assessment procedures are often booked years out.
What should you do if you or a loved one suspects they have autism? How can you overcome these obstacles? The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) online offers high test-retest reliability and concurrent validity and can show that no neurotypical who took the test scored above the autism threshold. It is available for free online. Other tests that are available online are the Autism Quotient (AQ) test and the Aspie Quiz. These tests may not be the same thing as an official diagnosis by a clinician, but they are validating and, in the absence of other options, they help you confirm your own self-diagnosis.
In the end, we need more than a few online tests; we need a diagnosis to be more available and for clinicians to be more validating, but it is good to have resources while we wait because diagnosis and validation do matter.
Leedham, A., Thompson, A.R., Smith, R., & Freeth, M. (2019), "I was exhausted trying to figure it out": The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism.24, 1
Howlin, Patricia, Moss, Phillipa (2012). Adults with Autism Spectrum Disorders. Canadian Journal of Psychiatry. 57(5). 275-283
Steven D. Stagg & Hannah Belcher (2019) Living with autism without knowing: receiving a diagnosis in later life, Health Psychology and Behavioral Medicine, 7:1, 348-361, DOI: 1
Fusar-Poli, Laura, Brondino, Natascia, Politi, Pierluigi, & Aguglia, Eugenio (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European Archives Psychiatry and Clinical Neuroscience. 272(2): 187-198