Sorry, but I Don’t Believe Your Autism Diagnosis
The importance of biomarkers in a diagnosis that remains subjective
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After meeting more than ten people who, theoretically, are also on the autism spectrum, I began to develop a certain skepticism toward diagnoses.
And I say this as someone who was diagnosed with Asperger’s later in life.
I received my diagnosis around the age of 30, but ever since childhood, I knew there was something different about the way reality was integrated into my perception. Two factors, in particular, went far beyond the behaviors typically observed in diagnostic protocols.
The first was a deep and exhausting analysis of natural and human events. Everything had to be processed, understood, broken down.
The second was a kind of inertia of feelings and emotions, which often resulted in the absence of a spontaneous reaction to events. Everything was processed, but not everything was felt at the moment it happened.
The combination of these two factors led me to construct countless social scripts. I learned what to say, when to say it, how to react, and, most importantly, how to appear spontaneous. With more than twenty years of therapy, I became capable of appearing to be an extremely sociable person.
Perhaps that is why so few people notice how mechanical this sociability actually is. Behind something that appears natural lies an almost algorithmic sequence of observation, processing, and response. In a way, I learned to simulate spontaneity so well that hardly anyone notices just how much, underneath it all, I function like a robot.
But that is not the main point.
I could write about the extent to which autism and OCD have impaired my life. I won’t. Suffice it to say that there were periods of profound dysfunction, days spent checking things over and over again, and entire weeks spent processing certain subjects, as though my mind were incapable of moving forward until that processing was complete.
And yet, I never wanted a diagnosis!
And perhaps that is precisely where my discomfort began.
Today, I see people desperately seeking a diagnosis because they hope to find in it a definitive explanation for their loneliness, social difficulties, sense of inadequacy, or certain personal limitations.
I can understand the relief of finally finding an explanation for a lifetime of difficulties. What concerns me is when a diagnosis stops being a tool for understanding and starts functioning as an identity capable of explaining absolutely everything.
There is an important difference between understanding a limitation and turning that limitation into destiny.
When I received my first diagnosis, my reaction was not relief.
It was distrust.
My first hypothesis was almost absurd: perhaps I was intelligent enough to have fooled the evaluator herself, even though she was a highly regarded professional in the field. So I sought a second evaluation. Then I consulted a psychiatrist. Later, I also underwent genetic testing, which indicated an approximately 1.42x higher genetic predisposition to autism.
That alone did not confirm the diagnosis, but it added another independent piece of evidence to a story that was becoming increasingly difficult to dispute.
Even then, it took me months, perhaps years, to publicly incorporate the diagnosis into my identity.
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When I began telling people close to me, the response was almost always similar:
“It’s not exactly news, is it?”
It was precisely this retrospective consistency that began to make me question some of the other diagnosed people I met. I do not expect to find the same signs or the same intensity that I found in myself, but in some cases, the evidence seems surprisingly weak for a condition that has been present since development.
It is evident that there are more diagnoses today because we know more about the spectrum, professionals are better prepared, and access to information is far greater. People who, decades ago, might have spent their entire lives without understanding their difficulties can now find answers.
That is progress.
But greater access to diagnosis does not make the diagnostic process infallible.
People can provide inaccurate information. Professionals can make mistakes. Symptoms can overlap with other conditions. And in a diagnostic process that remains fundamentally clinical, interpretation inevitably involves some degree of subjectivity.
Recently, for example, I met someone diagnosed with level 2 autism who regularly attended parties.
My immediate reaction was disbelief.
When I was the same age, I could manage to go to a party perhaps once a month. My friends had to get me drunk quickly so that I would not want to leave, and even then, I would often arrive home in the middle of an anxiety attack.
My first conclusion was simple:
“How can someone with level 2 support needs do this if I, with level 1 support needs, know that my hardware simply won’t allow it?”
But there is a problem with that question.
It assumes that my autism should be the yardstick by which other people’s autism is measured.
It shouldn’t.
Support levels do not represent a linear scale of ability, and two people classified within the same spectrum can have radically different limitations. Someone may tolerate intense social environments while experiencing impairments far greater than mine in other areas.
That, however, does not eliminate the question that stayed with me.
How accurate are our diagnoses?
My skepticism today is not necessarily about that person. It is about a system that still relies heavily on interviews, personal history, behavioral observation, psychometric instruments, and clinical judgment to define an extremely heterogeneous condition.
Perhaps, then, the title of this article is deliberately wrong.
I do not have enough evidence to say that you are not autistic.
But neither do I believe that a diagnosis, simply because it exists, should be treated as an epistemologically perfect truth.
That is why I believe it is important to advance research into biomarkers associated with autism, not as instruments of segregation or as tests designed to determine who is “really autistic,” but as complementary tools capable of improving diagnostic accuracy, identifying different biological mechanisms within the spectrum, and reducing both false positives and false negatives.
Because a correct diagnosis can reorganize a life.
But so can an incorrect one.
And perhaps the greatest risk is not discovering that you are autistic at the age of 30.
Perhaps it is spending decades organizing your identity around an explanation that was never the right one.
