Breaking the mold. Let’s redefine Autism for right now. (Part 1)
Introduction:
In recent years, Autism Spectrum Disorder (ASD) has become an increasingly recognized and discussed topic in both the medical world and the popular media. Still, misconceptions and confusion about ASD continue to exist. As a neuropsychologist, I often talk to patients, families, and even professionals from related fields wanting to know what ASD really is. If you have questions about ASD, then you’re in the right place. I wrote this comprehensive cheat sheet in order to shine a bright light on the complexities of Autism Spectrum Disorder. In this article, you will find accurate, up-to-date information so that you can gain a deeper understanding of this multifaceted condition.
Autism Spectrum Disorder is a neurodevelopmental condition that affects how people perceive the world, interact with others, and process information. The term "spectrum" is important here because it reflects the wide range of experiences and challenges faced by those with ASD. No two people with autism are exactly alike.
Let’s look at some recent stats:
- According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 36 children in the United States is diagnosed with ASD as of 2023. This is a stark increase from the 1 in 150 from 2000.
- The prevalence of ASD is almost four times higher in boys than in girls (1 in 22 boys & 1 in 94 girls are diagnosed with ASD).
- Globally, it's estimated that about 1% of the world's population has ASD. That’s millions of people worldwide.
These numbers highlight not only the prevalence of ASD but also the critical need for widespread understanding and acceptance. Throughout this article, we’re going to explore all things ASD, from how it looks different in each person to gender differences to diagnostic processes. I’m aiming to debunk myths, clarify terms, and also emphasize the various strengths and challenges associated with ASD.
Without further ado …
What exactly is Autism Spectrum Disorder?
Autism Spectrum Disorder (often shortened to ASD) is a lifelong condition that affects how a person's brain develops and works. It's called a spectrum disorder because it can look very different from one person to another. Some people with ASD might need a lot of help in their daily lives while others might need very little or no help at all.
Let’s break down ASD into its key parts:
Communication: People with ASD might find it hard to talk with others or understand what others mean when they speak. Some might not speak at all while others might talk a lot about topics they really like.
Social interaction: Many people with ASD struggle to understand social cues. They might find it difficult to make friends, keep eye contact, or understand jokes and sarcasm.
Repetitive behaviors: People with ASD often like routines and might get upset when things change. They might also repeat certain movements or have very specific interests.
Sensory sensitivities: Many people with ASD are either very sensitive or not sensitive enough to things like loud noises, bright lights, or certain textures.
Key tidbit - having ASD doesn't mean a person is less intelligent. In fact, many people with ASD are very smart and have amazing skills in areas like math, music, or art.
The idea of ASD being a spectrum means that its traits can show up in many different ways. Think of it like a big mixing board in a recording studio. Each person with ASD has their own “settings” for things like social skills, language ability, and sensory sensitivities. This is why two people with ASD can seem very different from each other.
Doctors and scientists are still learning about what causes ASD. We know that genes play a big role. Also, other factors in a person's environment might be important. What we do know for a fact is that ASD is not caused by bad parenting or vaccines – these are myths that have been proven wrong by a ton of research.
How Common is Autism Spectrum Disorder?
Let's go to the numbers:
In the United States: As mentioned above, about 1 in 36 children are diagnosed with ASD. So in a random school that has 500 students, you might expect to find around 14 students with ASD.
Boys vs. Girls: ASD is diagnosed more often in boys than in girls. For every girl diagnosed with ASD, almost four boys are diagnosed. BUT, this doesn't necessarily mean that ASD is less common in girls. Some experts think that ASD might look different in girls. This would then make it harder to spot.
Around the World: About 1 in every 100 people worldwide has ASD.
Changes Over Time: The number of people diagnosed with ASD has gone up a lot in recent years. In 2000, only about 1 in 150 children were diagnosed with ASD. Now it's 1 in 36. This big change doesn't mean that more people are actually developing ASD. Instead, it's likely because:
We're better at detecting ASD now
The definition of ASD has changed to include more people
Increased awareness of ASD has led more people into getting evaluated for it
It's important to remember that these numbers are just averages. In some places, the number of people with ASD might be higher or lower. Also, many adults with ASD might not know they have it, particularly if they were born before we knew as much about ASD as we do now.
The Many Faces of Autism Spectrum Disorder
One of the most important things to understand about ASD is that it can look very different from person to person. This is why we call it a spectrum. Let's get into some of the ways ASD can show up:
Communication:
Some people with ASD might not speak at all.
Others might talk a lot, especially about topics they're really interested in.
Some might find it hard to understand figures of speech or sarcasm.
Social Skills:
Some people might prefer to be alone and/or find social situations overwhelming.
Others might want to make friends but struggle to understand social rules.
Some might have trouble reading facial expressions or body language.
Behaviors and Interests:
Many people with ASD like routines and might get upset when things change.
Some might have very intense interests in specific topics.
Others might repeat certain movements (like hand-flapping) when excited or stressed.
Sensory Differences:
Some people might be very sensitive to loud noises, bright lights, or certain textures.
Others might seek out strong sensory experiences (e.g., spinning or touching certain objects).
Thinking and Learning:
Many people with ASD are very good at remembering details or solving certain types of problems.
Some might excel in subjects like math, music, or art.
Others might struggle with abstract concepts or open-ended questions.
It's important to keep in mind that having some of these traits doesn't automatically mean a person has ASD. Also, a person with ASD won't necessarily have all of these traits.
The way ASD affects a person can change over time. For example, a child who doesn't speak much might become very talkative as an adult. Or someone who struggles with social skills as a teenager might learn strategies to interact more comfortably as they grow up.
Gender Differences in Autism Spectrum Disorder
We’ve established that ASD can look different in boys and girls. For a long time, people thought ASD was much more common in boys. But now we're learning that it might not be as simple as that.
Diagnosis Rates:
Boys are still diagnosed with ASD about four times more often than girls.
Experts now think that ASD might be underdiagnosed in girls.
Why the Difference?:
ASD traits can show up differently in girls (e.g. symptoms can be more subtle).
Fun fact: many of our tools for diagnosing ASD were created based on how ASD looks in boys.
Girls might be better at hiding or masking their ASD traits.
How ASD Might Look Different in Girls:
Girls with ASD might have stronger language skills than boys with ASD.
Girls might be more likely to mimic others in social situations.
Their intense interests might be more socially acceptable (like animals or dolls).
They might be quieter or seem shy rather than socially awkward.
Challenges for Girls:
Because ASD can be harder to spot in girls, they might not get diagnosed until later in life.
This can mean that girls miss out on early support and understanding.
Girls with ASD might struggle more with anxiety or depression.
Changing Understanding:
Researchers are now working on better ways to identify ASD in girls.
There's growing awareness about how ASD can look different across genders.
It's important to remember that these are general trends. Some boys might show traits more commonly seen in girls and vice versa.
What about Asperger’s? Isn’t that ASD?
You might have heard both "Autism Spectrum Disorder" and "Asperger's Syndrome" used to describe similar behaviors. Let's clear up this confusion right now. But first, a little history lesson:
Asperger's Syndrome was named after Hans Asperger, a doctor who described the condition in the 1940’s. It was originally thought to be separate from autism.
People diagnosed with Asperger's typically had strong language skills but struggled socially. In 2013, the main guide that doctors use to diagnose mental health conditions (called the DSM-5) made a big change. It dropped Asperger's Syndrome as a separate diagnosis and included it under the general heading of Autism Spectrum Disorder.
Why the change? Experts realized that autism and Asperger's weren't really too different. They're part of the same spectrum but each involves needing different levels of support. They essentially felt like the line between Asperger's and autism was too muddy and inconsistent.
What does this mean today? Now, we use "Autism Spectrum Disorder" to cover all types of autism, including what used to be called Asperger's. Instead of separate labels, we now talk about different levels of care a person might need.
If Asperger’s isn’t a separate term, why do some people still use it? Honestly, because some people diagnosed before 2013 (when the terms changed) might just prefer to use "Asperger's". Perhaps it has become part of their identity or how they understand themselves.
Important Note – To address the elephant in the room, some people have stopped using "Asperger's" because of concerns about Hans Asperger's actions during World War II.
