AUTISM: BEYOND THE LABEL — PART 2
WHEN AUTISM ISN’T ALWAYS OBVIOUS
Let me ask you something.
What if autism is there… but you don’t recognize it?
A child may speak well
Make eye contact
Do well at school
Have friends
And yet, they may still be autistic.
So why can autism sometimes be so difficult to notice?
THE AUTISM WE DON’T SEE
When we think about autism, we often picture a child whose differences are easy to recognize. But what about the people whose autism was never identified in childhood?
Some autistic people grow up unaware of their autism. They may reach adulthood, build careers, form relationships, and manage everyday responsibilities while quietly struggling with tasks others seem to find easier.
WHY MIGHT THEIR AUTISM GO UNRECOGNIZED?
Some,
Learn to observe others
Copy social behaviors
Rehearse conversations
Hide their discomfort to fit in
Others may be described as,
Shy
Anxious
Unusually sensitive
Simply different
Because they appear to be coping, the difficulties beneath the surface may go unnoticed, sometimes even by the individuals themselves.
For some, recognition comes only in adulthood, perhaps after years of feeling out of place or struggling to make sense of their experiences. An autism diagnosis later in life does not mean that autism began in adulthood. It means the characteristics may only now be recognized and understood.
And this is why we need to look beyond what we can immediately see. Not every autistic person is recognized in childhood, and not every autistic experience is visible to others.
But when we look at the broader developmental picture, they may help us understand how a person experiences the world.
And this brings us to an important concept.
Masking
WHEN AUTISM ISN’T OBVIOUS: MASKING & CAMOUFLAGING
Imagine having to study how everyone else behaves…just to figure out how you’re supposed to behave.
Masking or camouflaging describes ways some autistic people consciously or unconsciously adapt, suppress, or hide aspects of their autistic characteristics in social situations.
It might look like:
“Remember to make eye contact.”
“Don’t talk about your favorite subject for too long.”
“Watch what everyone else is doing.”
“Try not to react when something feels uncomfortable.”
These strategies may help someone navigate social situations. But they can also require considerable effort.
And sometimes, the person may not even realize how much they are doing it.
So, from the outside, we may see someone who seems to be doing fine.
But we may not see the effort involved…or the exhaustion afterward.
WHY CAN AUTISM BE MISSED IN GIRLS?
Now let’s talk about something researchers have been paying growing attention to.
Autism can be under-recognized in girls and women.
One possible reason is that some autistic girls may become skilled at observing and adapting to social expectations.
They may learn,
How to smile
How to join a conversation
How to respond
How to make eye contact
How to appear socially comfortable
But appearing socially capable doesn’t necessarily mean social interaction feels easy.
Some girls may also have interests that seem more socially typical, which can make autistic characteristics less obvious to others.
But we should be careful here.
Not every autistic girl masks.
Not every autistic boy doesn’t.
Masking can occur in people of different genders.
The important point is that autism can present differently from the stereotype we’ve learned to recognize.
WHEN DIAGNOSIS COMES LATER
Now imagine reaching adulthood before anyone explains why certain things have always felt different.
You may have spent years thinking,
“Why are social situations so exhausting for me?”
“Why do unexpected changes affect me so much?”
“Why do sounds, textures, or crowded places overwhelm me?”
“Why does everyone else seem to know the rules of social interaction?”
Some people receive an autism diagnosis much later in life. But receiving a diagnosis in adulthood doesn’t mean autism suddenly appeared then.
AUTISM IS A NEURODEVELOPMENTAL CONDITION
Diagnostic assessment considers characteristics that were present during the early developmental period, even when they weren’t recognized at the time.
Sometimes those characteristics become more noticeable when the demands of life increase.
For some people, receiving a diagnosis can bring a sense of relief or validation. For others, it may bring a mix of emotions.
Sometimes their problem changes from,
“What’s wrong with me?” to “Could there be an explanation for what I’ve been experiencing?”
WHEN AUTISM LOOKS LIKE SOMETHING ELSE
And here’s another reason autism can be missed
Some characteristics associated with autism can also occur in other conditions.
For example,
ADHD
Anxiety
Language or communication difficulties
Sensory difficulties
Depression
Social anxiety
And a person can also have autism alongside other conditions.
So, identifying one difficulty doesn’t necessarily explain everything a person is experiencing. That’s why assessment needs to look at the whole developmental and clinical picture.
SO, HOW IS AUTISM DIAGNOSED?
This is an important question
There isn’t a blood test that tells us someone is autistic, and there isn’t a single behavior that confirms autism.
Diagnosis involves looking at a person’s developmental history and patterns of behavior, communication and interaction, usually through a comprehensive assessment by appropriately trained professionals.
Clinicians consider areas such as,
Social communication and interaction
Restricted or repetitive behaviors and interests
Sensory differences
Developmental history
How characteristics affect everyday life
Depending on the person’s age and circumstances, information may come from the individual, parents or caregivers, teachers, or others who know them well.
In other words, autism isn’t diagnosed by checking off a few familiar traits.
The bigger picture matters.
AUTISM IS MORE THAN A CHECKLIST
A checklist can help professionals recognize patterns. But a human being is much more than a list of characteristics.
Two people may meet diagnostic criteria for autism… yet still have completely different personalities, strengths, challenges, communication styles, interests, and support needs.
That’s why assessment asks,
“What characteristics are present?”
but also,
“How do these characteristics affect this person’s life?”
And,
“What support would help this person thrive?”
A DIAGNOSIS IS NOT A DEFINITION
Perhaps this is the most important message in our Autism- Beyond the Labels article series- part 2.
An autism diagnosis,
Doesn’t tell us someone’s intelligence
It doesn’t tell us their potential
It doesn’t tell us how successful they can become
And it certainly doesn’t tell us their worth
A diagnosis can help us understand a person better
It can help identify support needs
It can help families, teachers, and professionals respond more effectively
But the diagnosis is only one part of someone’s story. There is still a whole person behind the diagnosis.
WHAT HAPPENS AFTER DIAGNOSIS?
A diagnosis doesn’t have to be the end of the journey.
For many people, it can be the beginning of better understanding and more appropriate support, and especially support should be individualized. What helps one autistic person may not help another.
Support might involve,
Educational modifications
Communication support
Psychological or emotional support
Family support
Sensory accommodations
Support with everyday living or social communication
Sometimes support is about helping a person develop skills. And sometimes…
it’s about changing the environment around them.
Reducing unnecessary barriers
Making communication easier
Respecting sensory needs
Creating spaces where someone doesn’t have to constantly pretend to be someone they’re not.
LOOKING BEYOND THE LABEL
So, what have we learned?
Autism isn’t always obvious
It can be masked
It can be misunderstood
It can sometimes be overlooked, including in girls and women
It can occur alongside other conditions
And diagnosis requires much more than spotting a few familiar traits
But perhaps the biggest lesson is,
We shouldn’t judge someone’s internal experience by what we see on the outside.
Someone who appears confident may be struggling.
Someone who appears socially comfortable may be exhausted.
Someone who seems “fine” may have spent years learning how to look fine.
So, the next time we meet someone who doesn’t quite fit our idea of what autism “looks like”
maybe the better question is not,
“Do they look autistic?” Maybe it is, “What might I be missing?”
Because understanding autism begins when we stop looking only for the obvious.
Coming Next…
AUTISM: BEYOND THE LABEL — PART 3
BEYOND DIFFICULTIES: RECOGNIZING STRENGTHS
Because autism isn’t only about what someone finds difficult.
It’s also about understanding the individual behind the diagnosis, their interests, abilities, perspectives, and strengths.
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