By Casey-Lee Flood, RN, HWNC-BC, NC-BC

If you've ever heard the term Asperger's syndrome and wondered why doctors don't use it anymore, you're not alone. Many people grew up with this diagnosis. Even today, a lot of individuals still describe themselves as having Asperger's or identify as an “Aspie”. 

So why aren’t doctors using it, and why are some advocacy groups so against it? 

There used to be a category called Pervasive Developmental Disorders (PDD) in the Diagnostic Statistical Manual of Mental Disorders, 4th ed. (DSM-4). Autistic Disorder, Asperger’s syndrome, and other conditions fell under the (PDD) category. Asperger’s, despite having similar diagnostic criteria to what was then called Autistic Disorder, was considered a completely separate condition. 

Because of the similarities in symptoms/traits of these conditions, among other reasons, when the DSM was revised in 2013, the decision was made to restructure the diagnostic criteria for PDD conditions.

This led to the diagnosis of Asperger's syndrome being removed from the DSM 5th edition completely. For a more detailed and clinical explanation of all the changes that occurred, please see this article. 

This change can feel confusing, especially for people and families who have lived with the Asperger's label for years. From a nursing perspective, I often hear questions like: "What does this mean for me now?" or "Was my diagnosis taken away?"

The answer is no—your diagnosis, experiences, and needs haven't changed. What has changed is the way the medical community organizes and names things, for clarity and consistency.

The remainder of the blog will explain in more detail: What Asperger's syndrome was, why it was folded into autism spectrum disorder (ASD), and how ASD is now diagnosed. Most importantly, you’ll learn how the DSM-5 changes continue to affect the autism community and caregivers.

What was Asperger's syndrome?

Asperger's syndrome was once considered a separate condition under the broader PDD category. It was completely separate from what was then called autistic disorder. 

People with Asperger's typically had:

• Challenges with social interactions, such as difficulty understanding unspoken rules or reading body language or maintaining eye contact
• Intense, focused interests
• A preference for routines and structure
• Average to above-average intelligence
• No significant delays in spoken language development (this was one of the main distinctions from "classic autism”)
• A flat affect (their facial expressions didn’t always match what they were feeling)

Asperger's was sometimes seen as a "milder" form of autism because individuals were able to communicate orally. As you can see, part of this criterion is based upon how others perceived the person, not about what support they needed.

Many people strongly identified with the term “Aspie” and found community, pride, and belonging through it. For some, saying "I have Asperger's" felt easier or safer than saying "I am Autistic."

That's because autism has always carried stigma and misunderstanding in society—the term autism started as a symptom of schizophrenia. People often continue to associate it with severe disability or negative stereotypes.

By contrast, Asperger's was sometimes viewed as more socially acceptable, even linked to being quirky, intellectual, or gifted (Think Sheldon Cooper from The Big Bang Theory). This difference in how the terms were perceived is a big part of why many people still use the term Asperger's today, even though it's no longer a formal medical diagnosis.

Why was Asperger's removed from DSM-5?

In 2013, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) officially removed Asperger's syndrome as a separate diagnosis. Instead, it was folded into autism spectrum disorder (ASD).

There were several important reasons for this:

Too much overlap

Clinicians found it very difficult to separate Asperger's syndrome from so-called "high-functioning autism." The differences were not consistent enough to justify being separate conditions.

Inconsistent diagnoses

Two people with very similar traits might get different diagnoses depending on which doctor they saw or which country they lived in. This inconsistency made it hard to ensure fair access to services.

Ethical Concerns

Hans Asperger, after whom the condition is named, is a controversial character. His "career was made possible by Asperger’s political concessions to the Nazi ideology and involved a certain degree of collaboration with the race hygiene apparatus, including the Nazis’ child ‘euthanasia’ program." You can read more here.

From a medical and nursing standpoint, the change made sense: by using "autism spectrum disorder", providers can be clearer, reduce confusion, and make sure all Autistic people get the services they need.

That said, it wasn't without controversy. Many diagnosed with Asperger’s syndrome felt that the medical community took something away from them—the identity and sense of belonging that came with the Asperger's label. For some, this change felt like erasure.

Others, including parents of individuals who have Level 3 ASD or what can be called "profound autism," felt, and continue to feel, like the struggles they face were diluted by having those with Asperger’s syndrome become part of the autism spectrum. 

This blog is not here to focus on the author's opinions regarding the two groups. One can never say what someone is feeling isn’t valid, but one can question if the feelings are tainted by outdated perceptions or ableism. 

How is autism spectrum disorder diagnosed now?

Today, instead of separating out conditions like "Asperger's" or "high-functioning autism," everything falls under the umbrella of autism spectrum disorder (ASD).

The word "spectrum" is essential—it reflects the wide variety of ways autism can present. 

Do not think of the autism spectrum as a singular line that shows if someone is less or more Autistic. Think more in terms of a color wheel, where each color can represent an Autistic trait and how strongly we experience them. 

Some people may need very little support in one area (less color), while needing full-time assistance in another. Everyone's color wheel will be unique to them and their support needs. Autism is not one-size-fits-all. 

To help quantify and clarify this, the DSM-5 introduced three levels of support needs:

Level 1: Requiring Support

This roughly corresponds to what used to be called Asperger's.

People diagnosed with Level 1 ASD typically learn to camouflage their Autistic traits. This "masking" can lead to some individuals not getting the support they need and create unintended consequences throughout their lives.

Level 2: Requiring Substantial Support

People at this level often need more support and have difficulty or lack the ability to hide their struggles. They may have noticeable challenges with spoken communication, relationships, and adapting to changes. Support might include specialized teaching methods, structured routines, or workplace accommodations.

Level 3: Requiring Very Substantial Support

Individuals at this level need significant help with communication, daily living, and often require full-time care or structured environments. They may have limited spoken communication and find daily tasks extremely challenging without assistance. Level 3 Autistic people can still communicate with those around them, and there are groups who continually work on improving access for nonspeakers. 

It's important to remember: these levels don't measure intelligence, worth, or ability. They are simply about support needs. A person at Level 2 might be brilliant in their studies of interest, but still struggle with communication skills and/or managing their hygiene and have repetitive stimming behaviors. A person at Level 3 may have deep knowledge or creativity, but need extensive support to communicate. 

Nursing perspective: Why this matters in care

For nurses and other healthcare providers, understanding this shift isn't just about terminology—it's about offering patient-centered care.

• Accurate Documentation: Using the current diagnosis of ASD ensures clear communication across medical teams and insurance providers. This helps patients receive the right services without confusion.
• Respecting Identity: While documentation matters, so does honoring the language patients use for themselves. Some feel affirmed by "Aspie," others by "Autistic." Asking what a patient prefers shows respect and builds trust.
• Reducing Stigma: Nurses are in a unique position to help reduce stigma. By using supportive language, educating families, and advocating for accommodations, we can make healthcare more inclusive.
• Whole-Person Care: A diagnosis is one part of a person. As nurses, we look at the individual's strengths, goals, culture, and environment. Whether someone says "I have Asperger's" or "I am Autistic," our role is to support their health and quality of life.

Where are the Aspies now? 

If you or someone you know was once diagnosed with Asperger's, nothing about the person has changed—only the label in the medical system. On medical records, the diagnosis will now likely be listed as autism spectrum disorder (ASD), Level 1. The traits, challenges, strengths, and support needs didn’t disappear.

Socially, people can still choose how they identify. Some continue to proudly use the term Aspie because it feels more positive and/or less stigmatized. Others have embraced "Autistic" as a way of reclaiming and de-stigmatizing the word, or just because it is the make-up of their brain and therefore their lived experience. 

The key takeaway: The name may have changed, but the supports, resources, and accommodations available are still there—and in many cases, access has improved under the broader ASD diagnosis.

For many, this change is simply a shift in medical language. For others, it touches identity, belonging, and stigma. Both perspectives matter, and both deserve respect.

A diagnosis is not about labels—it's about understanding and support. Whether you identify as an Aspie, Autistic, or simply yourself, what matters most is having the right tools, accommodations, and compassion to thrive.

About the author:

Casey-Lee Flood, The Radical RN Advocate, AuDHDer, and disabled writer is passionate about making healthcare and autism education more inclusive. Drawing on 14 years of nursing experience and her own lived experience with multiple invisible disabilities, Casey-Lee’s mission is to empower others through knowledge and practical resources.

Recommended reading:

Why People Don't Say "Asperger's" Anymore (And Why I'm Glad)

What is Masking in Autism?

Clashes Between “Autism Parents” & Autistic Adults: How to Mend Fences