So much was lost as a result of not knowing for so long. Lost happiness, because of having to contend with unanswered questions as to why I faced such daunting challenges which none of my peers seemed to be facing. Lost time, during which I lived without a complete picture of who I truly am, during which my sense of self remained compromised. Lost opportunities which I was denied due to there being no diagnosis, from which I would have benefitted had they presented themselves. So much that was lost during those years of my life as an unidentified autistic.
Better late than never, but still. I paid dearly for not finding out until 40. As I ruminate on this matter, I cannot help but look back on my pre-diagnosis clinical experiences and attempt to explain to myself why not one of these clinicians said a word to me about the prospect of autism. I don’t blame them for my late identification as an autistic, even though their silence on this matter is the singular reason why the issuance of a diagnosis was, to say the least, delayed.
My now deceased mother was a clinician. After working as a social worker at a mental health center and a counselor for a school district helping students with emotional challenges, she went into private practice as a marital and family therapist. One night at the dinner table, she admitted something which made an impression on me and which I will never forget. She confessed that no matter how hard she might try, she would not be able to save a married couple she was counseling from what her instincts told her was inevitable divorce. Her tone while talking about this case was one of realism, of honesty, and without guilt, knowing that the outcome she saw coming would not be her fault if it did in fact come to pass.
It was then that I came to realize that the extent to which a clinical process can help a client has its limits. Not every dysfunctional relationship can be fixed. Not every challenge can be resolved. Not every diagnosis that is waiting to be made is, in fact, accurately made. In that moment, I admired my mother’s capacity to understand and open up about her own limitations as a clinician. As such, I don’t blame my late identification as an autistic on my pre-diagnosis clinicians. I do believe that they acted according to what they viewed as my best interests and did their best to position me for greater happiness and success, as I’m sure my mother did for her clients. These types of actions are not blame-worthy. The outcome I wanted, and which I was eventually granted, would simply have to wait.
As I look back on my earlier clinical experiences through my late-identified autistic lens, I wonder about the following:
- Perhaps an autism diagnosis was too much to expect of those clinicians with whom I worked in the 1980’s and 90’s. Back then, autism was not being diagnosed the way it has been in recent years, and not nearly as often. The only person I knew at the time who had been identified as autistic exhibited challenges that seemed more extreme than mine and had unique abilities that greatly exceeded those of my own. Furthermore, I knew another individual who faced challenges similar to mine and who, like me, was not diagnosed until considerably later in life.
- Was I actually adept enough at masking my autism to falsely lead the pre-diagnosis clinicians into believing that I was neurotypical? Before I figured out how to love who I am, feel comfortable in my own skin and bring out more of my genuine, authentic self, masking was a survival strategy upon which I depended in order to “fit in,” to delude myself into thinking I was just like everybody else and to please others as a way to avoid confrontational situations. Perhaps all of those years spent masking were collectively sufficient at persuading these clinicians to only see who I wanted them to see rather than the real me.
- Did my pre-diagnosis clinicians not possess enough knowledge of autism or practical experience with autistic clients to have their eyes open to the possibility of it or to be able to suspect or diagnose it with certainty? Maybe it did cross their mind that I should explore the possibility of autism, though they chose to say nothing because they didn’t feel the confidence that is required to take that kind of leap.
- Did some or all of them suspect autism yet refrain from disclosing their suspicion because of the social stigma that surrounds it? If so, I can imagine them not wanting to scare me or lead me into a state of depression. Those of us who are stigmatized often face pronounced emotional and mental health vulnerabilities. It seems to me that a discussion between a suspecting clinician and the client about the prospect of autism becomes more likely, and easier to have, if the stigma doesn’t exist. This is what neurodiversity self-advocates including me are working toward. The prevailing narrative needs to change.
Shortly before my 40th birthday, my wife and I agreed that there might be more to me than my auditory processing learning difference and that this was worth investigating. Eventually I would learn from one of my pre-diagnosis clinicians that a neuropsychological evaluation might shed light on any challenges or diagnoses that were there the whole time but of which I wasn’t yet aware, and sure enough it did just that. The revelation of autism felt like quite a gut punch when I first noticed it in the neuropsychologist’s final report, though it would eventually prove to be both beneficial and transformative.
Even though my pre-diagnosis clinical journey concluded later than I would have preferred, and deserved, at least it led me to a diagnosis when it was meant to happen, I suppose. Better late than never. All is well that ends well.
Sam Farmer is a neurodiversity community self-advocate, writer/author, and public speaker. Diagnosed later in life as autistic, Sam shares stories of lived experiences, ideas, and insights as to how one can achieve greater happiness and success in the face of challenge and adversity. A Long Walk Down a Winding Road – Small Steps, Challenges, & Triumphs Through an Autistic Lens is his first book. Visit samfarmerauthor.com to learn more.