Introduction
In my last essay, I wrote some about why I believe diagnosis is vital for autistic people, particularly adults like myself who went unidentified through earlier life stages.
Through my own process of suspecting I might be autistic to being confident enough to self-diagnose and then finally getting a professional confirmation, I became deeply interested in the topic. It's incredibly complex, often misunderstood, and equally important, all of which ignite my curiosity.
Over the last 2 years I've spent countless hours reading books, blogs, and academic papers, watching videos of both autistic and clinical perspectives, and connecting with various autistic communities online. Naturally, diagnosis is consistently a major topic of conversation around autism.
In this 5-part series of essays I will explore in depth many of the intricacies and stages of the diagnostic process, starting with taking a step back and sharing what my own experience looked like.
Some Background
It was only in 1987 when the American Psychiatric Association's diagnostic manual was revised to drop the requirement for onset of symptoms before 30 months, paving the way for adults, and even older children and teens to be eligible for diagnosis.
It took the inclusion of Asperger's Syndrome, then considered a milder subtype of autism before the concept of the "spectrum" was introduced, in the DSM-IV in 1994 to begin to initiate an evolution in understanding and recognition of how autism presents in individuals who from the outside appear to be "high functioning". (And I'd argue this evolution is very much still underway.)
As awareness of the autism spectrum is growing and diagnostic criteria has expanded, more and more adults who have always felt a bit like an alien wearing a human costume (some even call it Wrong Planet Syndrome) are connecting the dots about themselves by re-examining their lives through a different lens, and asking if autism could be the explanation for their differences.
When one starts pulling that thread, it often leads to months if not years of intense research and education on what autism is and isn't. (Aside from the social and communication differences, autistics are particularly well known for diving deeply into subjects of interest. For some late-identified people like myself, neurodiversity itself becomes a special interest because it is deeply personal.)
They may also have conversations with friends or family where they share what they've learned about autism and themselves, and ask if they see it, too.
For some, their own research, reflection, and consensus among those they're closest with leads them to a point where they're comfortable self-diagnosing. That may sound like a weird concept if you're not familiar with the reality of how difficult it can be to get a formal assessment and diagnosis as an adult, but most people in the autism community are quite welcoming and accepting of "self-dx":
If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline. If you notice you relate to these people much better than to others, if they make you feel safe, and if they understand you, you have arrived.
A communal definition of Autistic ways of being via AutCollab
What's Ahead In This Series
There are many reasons behind why people choose to self-diagnose over pursuing formal evaluation, and why many within the community consider it valid.
I'll dedicate a whole article in this series to a thorough exploration of what self-diagnosis entails, motivations for why people do it, a consideration of risks involved, and my advice for those who may be in that stage of their own discovery as well as those supporting someone who suspects they may be autistic.
There are others who self-diagnose and do not see a need to pursue a professional opinion or the value of a formal diagnosis, but the reality is many (and likely most) who stop there do so due to lack of access to affordable healthcare from a professional knowledgable and affirming in the different ways autism presents in adults, especially for women, people of color, transgender and non-binary people, and other marginalized groups.
It becomes less of a choice and more of their best option due to one or more barriers that can put a formal diagnosis out of reach.
For those privileged with the means to do so, following through with a formal assessment is necessary to unlock access to support and to validate their new self-understanding.
I'll devote another article to what the formal process looks like, some history about how autism and related developmental disorders have evolved, walk through the current diagnostic criteria as defined in the DSM-V, and offer tips for how to go about seeking a clinical evaluation.
Although the majority of this series will focus on topics leading up to and through the diagnostic process, a diagnosis by itself is mostly meaningless. What's most important is what one does with that information, and how they can utilize the new knowledge of their neurotype to improve their health and happiness.
To that end, I'll share some thoughts about how to navigate the post-realization identity shift (it happens whether you're formally diagnosed or not) and ongoing therapy in support of self-acceptance, self-advocacy, and other quality of life improvements.
Finally, in the last article of this series I'll share a list of resources I collected during my own discovery process which includes blog articles, videos, books, memes, music and more centered on the inner autistic experience.
There is a lot of amazingly thoughtful, compelling and creative content being put out into the world by autistic people. I believe the most effective way to make progress towards removing the systemic barriers that actively disable autistic people, in a society designed for the ~98% that are allistic, is to highlight authentic autistic voices as experts of our own lives.
If you're an adult who suspects you may be autistic, or if you care about someone in that position and are curious to learn about what they might be going through, or if you're a clinician interested in an autistic perspective of the diagnostic process, this series is written for you. I hope you find what you're looking for.