When Inclusion Becomes Erasure: The Difference Between Asperger's and Autism

I am always careful about how I have this conversation. There are times people are receptive to it and times the conversation gets shut down before it properly starts. The moment someone questions whether the autism spectrum is working as a diagnostic framework, it tends to get read as an attack on the people inside it. As if naming a problem with the category is the same as dismissing the experiences of the people it describes.

It is not. This piece is written from inside the diagnosis. It is written because the current framework is not serving all the people it was designed to help and because I have spent enough years navigating it to have something specific to say about where it breaks down.

What the Name Change Was Supposed to Do

I was thirteen when I was diagnosed with Asperger's Syndrome. Less than five years later, the term was retired when the DSM-5 consolidated it, along with several other previously distinct diagnoses, under the single umbrella of Autism Spectrum Disorder.

The reason the name needed to change was legitimate. Hans Asperger was found to have collaborated with the Nazi regime, referring children to a clinic where they were killed. Attaching his name to a diagnosis was no longer defensible, and I do not argue with that. That part of the decision was right.

What followed it was not.

Rather than developing a more precise replacement, one that captured the specific constellation of traits that had previously been identified as Asperger's, the response was to absorb the diagnosis into a broader existing category. The decision was framed as progress toward inclusivity and reduced stigma. But intention and outcome are different things, and the outcome for people like me has been a diagnosis that simultaneously over-explains and under-describes.

I did not want the name defended. I wanted it replaced with something better, something more accurate, something that reflected what research had actually learned about how these conditions differ from each other, rather than something that papered over those distinctions in the name of administrative simplicity.

The Difference Between Asperger's and Autism

When people who know me learn that I am autistic, the response is almost always the same. They tell me they would never have known, that I hide it well, that I don't seem autistic.

I still see myself as Aspie. It is not a term I am supposed to use anymore, and I understand why it was retired, but it is the word that actually fits my experience. In our house, my husband and I have our own word for it: spiskiness. It came from a mispronunciation of crispy, which is, it turns out, the most accurate description I have found for what it actually feels like to live inside my particular brain. Crispy. Crunchy. It has moments of real beauty and texture, and it also sometimes makes you tense up and feel deeply uncomfortable. Spiskiness is not autism, and it is not Asperger's. It is mine. And having a word for it that belongs entirely to us has made it easier to talk about than any clinical label ever has.

When I say I am autistic, something does not quite land. When I explain that my original diagnosis was Asperger's, people understand it differently and so do medical practitioners.

When I tell a doctor I am on the autism spectrum, I face a long series of questions designed to locate me somewhere on a broad diagnostic range. When I say I was diagnosed with Asperger's, the questions shorten considerably because the diagnosis represents a more defined set of symptoms. For someone who values efficiency, who already finds medical settings difficult to navigate, who once sat in a waiting room answering complex ASD questions while being treated for a stroke, the difference between Asperger's and autism is an important distinction to the people who are experiencing it.

The lived experience of my particular presentation is hard to define. There are aspects of my life I consider normal, but when compared to those around me, I discover they are far from that. Some of those aspects I love. Others make showing up in a world designed for brains other than mine incredibly difficult.

I do not know how to interact with people naturally. What looks effortless to most people requires, for me, a significant amount of engineering. I watch, I read the room, I process, I plan my contributions carefully. By the time I leave a social situation, I am exhausted in a way that is difficult to explain to someone who has never experienced it. Professional settings are easier because the communication is task-oriented. There is a purpose I can orient to. I particularly thrive in professional settings where nuance isn’t a requirement. Personal situations are harder because the purpose of the communication is not always clear to me, and without that clarity, I am working harder than anyone around me can see.

Written communication presents its own particular difficulty. Without the additional cues of tone, expression and body language, every message becomes a puzzle. And writing back carries its own weight, because what if I am misunderstood? What if what I have written does not land the way I intended?

My brain does not switch off. It runs constantly, generating ideas, theories, policy frameworks, plans. When I get to bed at night I need a television show in the background to give my brain something to land on so I can finally fall asleep.

This is a glimpse of my spiskiness. It is real and it is consuming, and it is also entirely different from the experience of someone with what used to be called classic autism. My experience is not better, not worse… just different. The same way that asthma and COPD are both chronic lung conditions with overlapping symptoms but are clinically distinct, require different treatment and are not considered interchangeable simply because they affect the same organ.

We do not tell someone with asthma that they have the same condition as someone with COPD. We do not collapse the two into a single lung spectrum disorder in the name of inclusivity. We recognise that precision in diagnosis serves the patient. The question is why we have not applied the same logic here.

What Gets Lost in the Broadening

One of the quieter costs of a broadened spectrum is how hard it becomes to find your people.

There are people in the world who experience things the way I do. Who navigate social situations through the same exhausting, learned pattern recognition. Who feel the particular texture of being slightly outside the room even when they are physically inside it. But finding them means wading through an enormous range of possible presentations, all gathered under the same umbrella, all described in the same general terms.

I feel most at home in the yarn community, where I have found more people who understand than almost anywhere else in my life. Occasionally I will meet someone who simply gets it, who understands the inside of my head without needing it explained. Those people are rare. It has been isolating for as long as I can remember, and even with a husband who loves me completely, I carry a fear that I will never find someone who truly understands how my mind works. 

The closest I have ever come is my dad. He has never been diagnosed with any spectrum disorder, but he is a lateral thinker with an off-the-scale IQ who the army once told could literally learn any job they put in front of him because his brain would simply acquire whatever it needed. I see so much of myself in him, and he understands my experience of the world in a way almost nobody else does. And even then, even in that closeness, it can still feel isolating. Which tells you something about how specific and singular this experience actually is.

The broadening of the category has not made that search easier. If anything, it has made it harder because the language available to describe my specific experience has become less precise, not more.

And I think about the other end of the spectrum too. I wonder whether people with classic autism feel that their experience has been complicated by having more people folded into their diagnosis. Whether they feel the weight of what happens when a condition becomes, as social media occasionally makes it, something almost desirable. When being a little different becomes coded as autistic. When people say, with a kind of lightness, that everyone is a little bit on the spectrum.

Because the actual experience is not light. It is not a quirk or an aesthetic. The person navigating the world as a non-verbal autistic adult with significant support needs is not having the same experience as me. We should both have language that reflects that.

Inclusion Is Not the Same as Accuracy

The decision to broaden the spectrum was made in the name of inclusivity, and inclusivity is worth holding as a value. But inclusivity at the diagnostic level is not the same thing as accuracy, and when the two get conflated, it is the people inside the diagnosis who pay the cost.

There is an argument that the distinction between Asperger's and classic autism was being used as a hierarchy, with some presentations considered more legitimate or more serious than others. I have never experienced it that way. I have always understood them as separate conditions, the way asthma and COPD are separate conditions. The answer to a perception of hierarchy is not to collapse the categories. It is to do a better job of clarifying that distinct does not mean ranked.

The research consequences of this are also challenging. I experience synesthesia, a condition where senses and experiences cross-associate in ways most people do not experience. It took me until my twenties to realise that not everyone moves through the world this way. When I search for research on the relationship between synesthesia and Asperger's specifically, I find almost nothing. What I find instead is research on synesthesia and autism broadly. But is synesthesia more prevalent in people with my particular presentation of spiskiness? Or more common at a different point on the spectrum? That question cannot currently be answered because the categories that would allow researchers to ask it precisely no longer formally exist. The broadening of the diagnostic framework has not just affected individual experience. It has narrowed what research can actually find out.

The same argument applies to how conditions present differently across sexes, ages and ethnicities. We know that autism has been historically under-diagnosed in women and girls partly because the diagnostic criteria were built on studies of male subjects. Better categories would produce better research. Better research would produce better outcomes. The current framework is working against that.

The science has not produced a broader and vaguer understanding of these conditions over the decades. It has produced a more detailed and specific one, if and when the medical community actually listens to the people experiencing it. The diagnostic framework has moved in the opposite direction, and that is not progress. It is a decision made for one legitimate reason, to retire a compromised name, being used to justify a much larger change that has not been adequately examined on its own terms.

What I needed was a better name. What we got was a bigger umbrella. And the people standing underneath it, at every point along the spectrum, deserve more precision than that.

The name needed to change. The category did not need to collapse.