I remember a little while back, a mom sat in my clinic, a thoughtful frown on her face. “Doctor,” she said, “my son was told he had Asperger’s a few years ago. Now I’m hearing that’s… not a thing anymore? I’m confused.” And you know what? That’s a perfectly fair question. It can be unsettling when medical terms change, especially when they’re tied to someone you love, or even to your own identity. So, let’s talk about Asperger’s Syndrome and what’s changed.
You see, Asperger’s Syndrome was a diagnosis we used in the medical world, right up until 2013. We saw it as a distinct type of autism. But medicine, like all science, learns and evolves. We realized that autism is much more of a spectrum – a wide range of experiences and characteristics. So now, both what we called Asperger’s and other forms of autism are all understood under one umbrella: Autism Spectrum Disorder (ASD).
If you or your child had an Asperger’s Syndrome diagnosis, it doesn’t just vanish. For many, that label is a really important part of who they are. Some folks proudly call themselves “Aspies,” and that’s absolutely their prerogative. Medically speaking, most individuals who previously had an Asperger’s diagnosis would now likely be described as having “level-one autism.” This generally means they might need a lower level of support in their day-to-day lives. But, and this is a big but, everyone’s journey is unique. Some might need more support, others less. The shift to ASD was really about trying to be more flexible and ensure everyone on the spectrum gets the help that truly fits them.
What We Used to Look for with Asperger’s
When Asperger’s Syndrome was a specific diagnosis, we generally looked for patterns in a few key areas. It’s useful to know these, as they still describe experiences some people on the autism spectrum have.
These often included:
- Social Interaction Nuances:
- Finding it tricky to use or understand nonverbal cues. Think eye contact, facial expressions, or body language in social settings.
- Sometimes, difficulty building friendships with peers.
- Maybe not always seeking out others to share joys or interests.
- Conversations – that back-and-forth flow – could sometimes be a challenge.
- Communication Styles:
- It might have been hard to start a conversation or keep it going.
- Sometimes, a tendency to use certain phrases or expressions repeatedly.
- Perhaps less pretend play than we might expect for their age.
- Focused Interests and Repetitive Behaviors:
- An incredibly deep, passionate interest in specific topics. It could be anything – train schedules, dinosaur facts, how a particular engine works. Wonderful, intense focus!
- A strong need for routines and predictability. Change could be tough.
- Sometimes, repeated movements, which we call stimming. This could be hand-flapping, rocking, humming – ways to self-soothe or express.
- A real fascination with the parts of objects, rather than the whole.
Back then, for an Asperger’s diagnosis, the old diagnostic manual (the DSM-IV-TR, for those who like the technical bits) had specific criteria. A person needed to show a certain number of these characteristics, they had to impact daily life, and importantly, there shouldn’t have been significant delays in early language or cognitive development. This last point was one of the main things that set Asperger’s apart from other autism diagnoses at the time.
We usually diagnosed Asperger’s in childhood, but sometimes adults would come to understand themselves this way later in life. And please know, if you’re an adult reading this and wondering about yourself, it’s never, ever too late to talk to a healthcare provider.
Is There an “Asperger’s Test”?
Because Asperger’s Syndrome isn’t a diagnosis we use anymore, there isn’t a specific “Asperger’s test” today. You might stumble across quizzes online, but it’s hard to say how accurate or up-to-date they are. My best advice? Always chat with a healthcare professional.
What we do now is screen for ASD during routine well-child visits. If you bring your toddler in, your pediatrician will likely have you fill out a questionnaire. It’s just a way to see if there are any early signs that might suggest being on the autism spectrum. If there are, they’ll guide you to a specialist who can do more in-depth observations and have more detailed conversations. It’s all about understanding and support.
What Causes ASD (Including What Was Asperger’s)?
This is the million-dollar question, isn’t it? “What causes it?” The honest answer is, we don’t know exactly what causes ASD. It’s complex. What we believe is that it’s likely a combination of genetic factors and environmental influences.
Diagnoses that now fall under ASD, including what we used to call Asperger’s, are all considered neurodevelopmental disorders. That’s just a way of saying there are differences in how the brain develops and is wired. These differences shape how a person thinks, learns, communicates, and experiences the world. It’s not a flaw; it’s a different way of being.
And yes, genes do seem to play a pretty big role. Often, these genetic differences can be passed down in families. Sometimes, though, they can appear for the first time in a child with no family history of ASD. It’s a fascinating, and still unfolding, area of research.
How We Approach Support for ASD Today
It’s really important to understand this: ASD, in all its forms, isn’t a disease to be “cured.” It’s a fundamental part of who a person is. So, our focus isn’t on trying to change the person, but on providing support and, if needed, therapies to help manage any challenges they might face in daily life.
There’s a whole range of therapies and supports available. Things like:
- Behavioral therapies: To help with social skills or managing challenging behaviors.
- Speech and language therapy: To support communication.
- Occupational therapy: To help with sensory sensitivities or daily living skills.
- Educational support: Tailored approaches in school settings.
You and your healthcare team, or your child’s team, will work together. We’ll talk about what feels right, what the goals are, and create a plan that fits.
Take-Home Message: Understanding Asperger’s and ASD
Here’s a little summary of what we’ve talked about:
- Asperger’s Syndrome is an older term. Since 2013, it’s been included under the broader diagnosis of Autism Spectrum Disorder (ASD).
- If you or your child had an Asperger’s diagnosis, that experience is still valid. Many now identify with “level-one autism.”
- The signs once associated with Asperger’s (social differences, communication styles, focused interests) are still recognized within the ASD spectrum.
- There’s no “Asperger’s test” anymore. ASD screening is done by healthcare providers, often starting in early childhood.
- ASD is thought to be caused by a mix of genetic and environmental factors, leading to differences in brain development.
- Support for ASD focuses on therapies and strategies to help individuals thrive, not on “curing” a difference.
You’re not alone in figuring this out. Whether you’re a parent navigating a new path for your child, or an adult reflecting on your own experiences, there’s a community and professionals ready to help. Keep asking questions, keep learning. We’re here for you.