Most adults who self-identify as autistic do so because they learned about autism on their own. Their doctors, family, educational system, and mental health providers did not catch it when they were children. This is fairly common given that the medical model of autism focuses on the external behaviors that are most common in white, cis, upper-middle class boys.
Many unidentified autistics muddle through life, feeling something is wrong or broken about them, but cannot quite figure out what. Eventually, by some twist of fate, they stumble on information about autism from a neurodivergent lens. As they learn about how autism can present in different genders, as well as the internal characteristics, many come to realize that they are likely autistic.
This is what is called self-identifying autism. Many feel they do not need a diagnosis to confirm their thorough research. Others do not want to be bothered with the cost and time pursuing diagnosis. Others are afraid they will be yet-again misdiagnosed by assessors that cling to the limited medical model of autism that frames it as a disorder. (You can read more about autism diagnosis process in my essays “Who Can Diagnose Autism in Adults?” and "The Gap Between Diagnosable Autism and Late-Identification”)
After so many years of pain, why would they risk more?
Furthermore, the benefits of diagnosis for adults are limited. Some of the benefits include access to educational accommodations, work accommodations, or government financial support. Given that many self-identified adults are self-supporting and finished with their educational endeavors, they do not need these forms of support. Furthermore, many do not desire work accommodations or feel they can speak with their employers about their needs without a formal diagnosis.
So these individuals choose to self-identify as autistic. The more they self-educate, the more they learn about their unique brain, dismantle shame, and develop strategies to thrive in life. Some even choose to work with autism coaches and therapists to learn even more. The quality of their lives dramatically improves.
I work with many of these people in my private practice. I work with diagnoses and self-identified autistics. I do not require anyone to have a formal diagnosis.
I write frequently about my personal experiences as a late-identified autistic, as well as my experiences of working with autistics. I directly discuss my validation of autistics who choose to self-identify (you can read my essay “Navigating Self-Identifying Autism” and “How to Self-Identify Autism.”)
When I share my writing about self-identification on Medium or Linked-in, there are inevitably critics who voice their opinion that self-identification in adulthood is potentially harmful.
Is it though?
Some worry that individuals may mis-identify themselves as autistic when they are actually not. There are many conditions that have overlapping symptoms with autism, such as CPTSD and ADHD (You can see my essay “9 Reasons Why CPTSD and Autism are so Common.”) They worry the person may not get the treatment and support they need for what is really going on. These individuals are invested in people feeling better - in living fuller lives.
Those of us who endorse self-identification are fighting for the same thing - we want people to feel better and live fuller lives.
I acknowledge the very real possibility of mis-identification. However, there is a far more harmful possibility within our medical and mental health systems: mis-diagnosis.
The mental health field simply isn’t educating its providers sufficiently to accurately diagnose autism (you can read my essay “Autistics Deserve Better from the Mental Health Field”). The neurodiversity field is evolving so rapidly that providers are not keeping up.
Most autistics will find more accurate, helpful information about autism on their own than through a general physician, psychiatrist, or mental health provider. That is the sad state of affairs of autism right now.
When individuals advocate for self-identification of autism, this is why. They’re not saying that every single mental health condition can be self-identified. They’re speaking specifically to autism. They’re looking at the reality of the field and saying, given what exists, it is far safer to self-identify.
Demanding that everyone get a proper diagnosis assumes that a “proper diagnosis” is possible in all cases. It simply isn’t. It’s living in a dreamworld - or a very privileged world.
There are informed, effective providers - but they frequently have full caseloads and high price tags. Things are changing with time, but they are not there yet. We need graduate schools to improve their curriculums. We need current practitioners to update their understanding and knowledge about autism. We need more informed, effective providers.
In the meantime, self identification and diagnosis don’t have to be pitted against each other. We want the same things: people getting access to the information that helps them.
Saying people should not self-identify autism robs many of the information and validity that has dramatically improved their lives. There is a significant population of people who have the intelligence, self-awareness, and researching prowess to accurately self-identify autism.
And yet, it is true that some people may mis-identify. If someone self-identifies as autistic and they continue to struggle immensely, I would absolutely want them to seek additional professional support. I would want them to consider that maybe something else is at play.
Our concerns about self-identification and diagnosis can co-exist. We can work together by advocating for improvements to the mental health field (you can read my essay “Autistics Deserve Better from Mental Health Field”), access to mental health, and increasing access to clear, helpful information about autism. This would benefit those who choose to self-identify and those who want more people to pursue diagnosis.