Asperger’s: what the term means today

Under the DSM-IV, people could be diagnosed with one of four separate conditions: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or a catch-all called PDD-NOS.

Since 2013, these have been brought together under one name, autism spectrum disorder, with a description of each person’s support needs.

Because Asperger’s was an official diagnosis from the early 1990s until 2013 in the U.S. (and until ICD-11 elsewhere), many people grew up with it on their records and in their sense of self.

Wing’s 1981 paper described the features, course and possible causes of Asperger’s syndrome. She suggested grouping it with early childhood autism in a wider category based on differences in social interaction, communication and imagination.

This thinking helped lead to today’s single “autism spectrum”.

The WHO’s ICD-10 (1992) and the American Psychiatric Association’s DSM-IV (1994) both listed Asperger’s as its own diagnosis.

A study of 2,102 children at 12 U.S. university clinics found that standard test scores were similar across sites, but the subtype each child was given varied a lot. Clinics weighed language and IQ differently.

The researchers concluded that the lines between autism subtypes were not reliable, and suggested describing each person’s traits and needs instead.

Instead of separate boxes, the DSM-5 describes autism as a spectrum. Clinicians note each person’s support needs, language and learning abilities, which can change over time.

The WHO’s International Classification of Diseases (ICD-11), adopted in 2019, made the same change. Asperger’s is no longer a separate diagnosis in either major system.

Schools, employers, insurers and benefit services may now ask for an autism spectrum disorder diagnosis. In research, some adults worried the change could affect access to funding and services.

Some people feel relieved to be part of the wider autistic community. Others feel a part of their identity was taken away. In interviews, adults with Asperger’s diagnoses held very different views.

Official manuals changed, but nobody can tell you how to describe yourself. Some people say “I have Asperger’s”, some say “I’m autistic”, and some say “I was diagnosed with Asperger’s, which is now called autism.”

In an Australian study of 12 adults diagnosed with Asperger’s, people’s views on the change were linked to where they were in making sense of their Asperger’s or autistic identity, not to their age or background.

In a Canadian study of 12 adults, many said they identified with the Asperger’s community because its descriptions matched their own experiences closely. Losing the name felt like a threat to that belonging.

For someone diagnosed in the 1990s or 2000s, “Asperger’s” may be the word they have used for decades with family, friends and doctors. Changing words can take time, or may not feel right at all.

A 2018 study by historian Herwig Czech used archive records from Nazi-era Vienna. It found that Hans Asperger accommodated the regime, publicly supported forced sterilisation, and cooperated with the child “euthanasia” programme on several occasions.

The UK’s National Autistic Society notes that his referrals led to dozens of children being sent to a clinic where they were killed. This research challenged an earlier belief that he had protected children.

Some autistic people feel that a separate, “milder” label created a ranking within the community, as if some autistic people counted more than others. Labels like “high-functioning” can also hide how much support someone really needs.

Many prefer to describe what support a person needs in different parts of life, rather than sorting people into types.

For some, using “autistic” for everyone on the spectrum feels like solidarity: one community, with many different strengths and needs.

In a UK survey of 3,470 people, “autism” and “on the autism spectrum” were accepted across autistic adults, families and professionals. “Autistic” was chosen by many autistic adults and parents, but by fewer professionals.

It’s fine for someone to describe themselves this way. If you are writing or speaking about a group, “autistic people” or “people on the autism spectrum” includes everyone.

Clearer ways to talk

• “Busy days use up his energy fast.”
• “He finds phone calls hard and prefers email.”
• “She needs quiet breaks at work.”
• “They are great with detail and patterns.”

Asking shows respect. Then use their words, even if they are different from what you’d choose.

Asperger’s was used for autistic people without a learning disability, not for people with small needs. Someone with strong language skills may still struggle hugely with noise, change, burnout or anxiety.

The American Psychiatric Association says people with DSM-IV diagnoses, including Asperger’s, should still meet the DSM-5 criteria for autism spectrum disorder or another more accurate diagnosis.

The National Autistic Society notes that some people keep using the term because it matters to their identity. That’s a personal decision.

Autism is something people are born with. It isn’t an illness and there is no cure, but the right support helps people live well.

Autistic-led organisations put autistic voices at the centre of conversations about autism. Many welcome people who say “Asperger’s” and people who say “autistic”.

The Autism Society’s National Helpline can point you to local groups and services near you.

Looking back at how a diagnosis shaped your school years, work and relationships can bring clarity. The worksheet “What my label means to me” can help.