Story of a Failed Diagnosis

In theory, the idea was simple: a diagnosis to clear away every doubt. To stop swinging like a frantic pendulum between the certainty of being autistic and the unbearable shame of feeling like a pathetic impostor, duped by self-suggestion.

In practice, it was like going to the doctor with all the symptoms of a fever and being told: "40°C? No, the thermometer needs to read at least 45, stupid!"

My first attempt at a diagnosis ended in spectacular failure. I learned the hard way that the medical space is far from neutral: it’s full of filters, expectations, and stereotypes. And if you don’t behave the way people expect an autistic person to behave, you simply don’t exist.

I just wanted a diagnosis, not another trauma

In the first issue of this newsletter, I shared how it all began: my first encounter with neurodivergence, the suspicion that something deeper might lie behind years of anxiety and depression, and months of obsessive research.

Caught somewhere between shock and relief as I stumbled upon explanations that finally made sense of my past and present experiences, I eventually came across several self-assessment tests: the Autism Spectrum Quotient, the RAADS-R, the Camouflaging Autistic Traits Questionnaire, and the Aspie Quiz. These tests, of course, aren’t definitive diagnostic tools, but they can indicate whether further exploration is worthwhile. I completed and recompleted them countless times, days and weeks apart, to rule out the possibility of self-suggestion. My scores consistently fell well above the threshold separating a neurotypical brain from an autistic one.

At that point, I wanted final confirmation. I wanted to hear it loud and clear: you are autistic; you didn’t imagine this. You’ve punished yourself for thirty years because you didn’t know your brain worked differently. You are autistic, and now we’ll stamp this officially so that everyone else can finally understand your oddities and make your life a little easier.

I live abroad, so turning to the local public health service was out of the question. For obvious reasons, I wanted to undertake this process in my native language. I asked around, mostly other neurodivergent people who had already received a diagnosis in Italy. Since the diagnosis process mainly involves testing and in-depth interviews, it can often be done remotely. So, I made a list of specialized centers and professionals who offer online consultations.

The first slap in the face came when I discovered the costs. An autism diagnosis, involving a variable number of sessions, typically costs between 500 and 700 euros. For me—a precarious, underpaid worker, always and forever—it meant not eating or paying rent for a month. And that’s just the diagnosis: what happens next? Should I leave with my stamped paper and magically feel better? Of course not. A diagnosis is only the beginning. Every support pathway that follows costs money too.

Despite these significant concerns, I decided it was still worth gathering some information. I scheduled an appointment with one of the very few clinics offering a free 20-minute introductory video call.

On the day of the fateful appointment, I sat tensely in front of my laptop. A middle-aged man appeared on the screen, introducing himself as the healthcare worker conducting the initial evaluation. I got straight to the point: I explained that I had spent months researching and self-analyzing, that I suspected I was on the autism spectrum, and that I wanted a diagnosis.

I will never forget the sudden change in his expression—somewhere between puzzled and surprised: "Autistic? You?!"

I immediately felt my face burn with embarrassment so intense I wanted to disappear. He followed up with questions that, at the time, made no sense to me: "Do you live alone? Can you make autonomous decisions? Do you work?" I answered yes, that I lead an apparently normal life. But that doesn't erase my daily struggles.

"I dealt with an autistic boy years ago, and you’re nothing like him. He couldn't even speak; we communicated through drawings," he continued.

At that point, I fell silent, stunned. The man concluded by saying that if I was really fixated on it, I could still proceed with the diagnosis. But he didn’t think it was necessary.

In just twenty minutes of video call, I was labelled as a poor fool, a kind of psychiatric hypochondriac inventing autism just to find an answer to her distress. In the following days, I spiraled into anxiety and despair. It took me a long time to pull myself out of that black hole. Even now, more than six months later, the idea of contacting another professional for a diagnosis fills me with anxiety.

Diagnosis and gender

Consensus is a specialized platform that makes academic research accessible. You can ask a specific question, and the search engine will find an answer based on the most relevant recent studies. I asked whether the current diagnostic criteria in the DSM-5 for autism spectrum disorders are equally effective for women. Here's the answer:

Based on the nine studies analyzed, the diagnostic parameters currently in use are not effective when it comes to women or people socialized as women.

According to existing data, the diagnosed autism ratio between male and female populations is 4:1. However, a 2017 study suggests the real ratio is closer to 3:1.

The problem lies in how diagnostic criteria were developed. The overwhelming majority of studies were conducted on male individuals, resulting in a model based on parameters that completely ignore the female autistic experience.

Only recently has there been discussion of a "female autism phenotype" with its own distinct characteristics that diverge from the dominant male model. People socialized as women face much greater social pressure than those socialized as men. From an early age, they are pushed to conform to behavioral standards: composure, politeness, kindness, helpfulness. This leads them to develop highly refined masking techniques that can make autism hard to detect from the outside.

But that doesn’t mean their adaptation struggles and emotional suffering are any less. Quite the opposite: constant self-censorship and relentless efforts to fit into incompatible patterns and rhythms often result in severe mental health issues that compound existing difficulties.

And here we are at the paradox. We are already less likely to receive a diagnosis in the first place due to a deeply skewed diagnostic system—I would say a patriarchal one. As a result, without answers or proper tools to understand and manage ourselves, we are more vulnerable to mental health issues. When we finally turn to professionals—often in adulthood, when we're already on the brink—our diagnoses tend to focus on what's most visible: anxiety, depression, and so on. The solutions offered end up being ineffective because the real root of the problem is never addressed. It’s an endless loop.

I myself have been in therapy for a long time, but none of the therapists I saw ever even hinted at the possibility that I could be neurodivergent. I never made real progress. I always felt like I was going in circles, endlessly, without resolving anything.

I don't blame the various professionals who have followed me over the years. They too were trained within an asymmetric medical paradigm that, by ignoring the experience of all those subjectivities (not only female but also male and non-binary) that don't fit the most pathologized parameters, creates a group of invisible people. People like me: too atypical to successfully adapt, but not "autistic enough" to be taken seriously by psychiatry.

Diagnosis and capitalism

As mentioned above, we must add the barrier of costs to this dismal picture. My experience is not an exception simply because, for logistical reasons, I had to turn to the private sector.

In Italy, as well as in many other European countries, public services dedicated to neurodivergence are few, overburdened, and often dysfunctional. Waiting lists are incredibly long. And since most services focus on childhood, finding specialized professionals and diagnostic pathways for adults in the public sector is even more challenging.

We know well that capitalism means privatization. In the case of mental health, privatization isn’t just economic but also social: psychological distress is framed as an individual responsibility—if not a personal fault. External, systemic causes are minimized. I am the one who is "broken," my brain is what doesn’t work as it should. Consequently, I am responsible for "fixing myself," which comes with an economic burden. Responsibility is shifted to the individual, turning mental healthcare into a paid service accessible only to those who can afford it, no longer a fundamental right.

And here we are, once again, at another paradox. Autism is not a "disease" to be "cured." It is a different brain configuration that clashes with a world designed for neurotypical minds, and thus potentially requires some level of lifelong support. Yet that support is often contingent on having a diagnosis, which is frequently unaffordable.

Especially when we talk about autistic people who don't fit current diagnostic criteria, the diagnosis can be the only useful tool to obtain the validation necessary to request accommodations in the workplace, where many autistic people face significant challenges.

Let's take a concrete example, one that mirrors my own experience. If you are autistic but lack an official diagnosis, no one at work will likely take your difficulties seriously.

Is the constant noise in the office draining you? You're too sensitive.
Do you get overwhelmed by sudden changes? You need to be more flexible.
Do you need time to recharge after intense interactions? You're not motivated enough.

Without a diagnosis, every request risks being seen as a whim. There are no adjustments, no accommodations. The result? You burn out, get sick, withdraw. Or you get fired because you are "not performing well enough." And when you lose your job, you also lose the financial means to get that diagnosis that might have saved you from burnout, stigma, exclusion.

It’s a vicious cycle. A perfect capitalist loop: if you don’t have money, you can’t get a diagnosis; but without a diagnosis, you may not be able to work enough to have money.

In this sense, diagnosis becomes a class issue. It’s not just about clinical recognition: it’s a ticket to access resources, protections, understanding. And if you can’t afford it, you’re left out.

A diagnosis is not enough

Disability is relational. It is not innate, not merely an individual "deficit," but largely depends on the structure of the environmental and social context. If 90% of the world’s population used wheelchairs and everything—cities, public transport, private and shared spaces—was designed around that reality, motor disability wouldn’t exist. People still wouldn’t be able to walk, of course, but there wouldn’t be that kind of disabling environment full of architectural barriers.

The same applies to the disabling experience of being neurodivergent. If the problem is relational, the solutions must also be relational. We need to call into question everyone’s responsibilities: to change a pathologizing, patriarchal clinical system, and to dismantle a capitalist system that prevents us from fully existing unless we learn to perform a normality that isn’t ours.

It is time to stop delegating the responsibility for change solely to those who suffer. We need collective transformation: in services, in language, in spaces, in relationships.

It’s not about "including" those considered outside the norm but about rethinking the rules of the game from scratch. Because a society that leaves no one behind is not built on individual empathy but on structural justice.

Thank you for sticking with me until the end.
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Talk to you soon,

Camilla

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