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Autism is complicated.

There is ongoing research into what causes it, disagreement about how we should talk about it and considerable variation in what autism looks like from one person to another.

This leaves parents in an unenviable position. Type “autism” into Google and you can quickly find a medical organization describing a neurodevelopmental disorder, a parent describing a profound disability, a bunch of stuff about school supports and someone on TikTok explaining that your dislike of fluorescent lights means you probably have it.

They are not necessarily talking about the same thing.

I have worked with autistic children and adults for most of my career. As an occupational therapist, I have spent thousands of hours treating, teaching, talking to and frequently being corrected by people who have it.

What Does the DSM Actually Say?

The Diagnostic and Statistical Manual of Mental Disorders, or DSM, is the book clinicians use to establish criteria for psychiatric and developmental diagnoses. It isn't designed to explain everything there is to know about autism. It gives clinicians a common set of criteria so that when two people use the word “autism,” they are at least supposed to be talking about roughly the same thing.

Autism Spectrum Disorder is classified as a neurodevelopmental disorder. The DSM organizes the core characteristics into two major categories.

The first involves social communication and social interaction. A person has to demonstrate persistent differences in all three areas:

•  Social-emotional reciprocity: The natural back-and-forth of interacting can appear different or feel difficult.
• Nonverbal communication: The unspoken parts of communication—facial expressions, gestures, eye contact, body language—are harder to read or use.
• Developing, maintaining and understanding relationships: Understanding how relationships work and adjusting to different social situations is harder.

The second category involves restricted or repetitive patterns of behavior, interests or activities. Here, a person must meet at least two of four criteria:

•  Repetitive movements, speech or use of objects: Movements, words, or ways of interacting with objects repeat in recognizable patterns
• Insistence on sameness or routines: Even ordinary changes can be surprisingly difficult to adapt to
• Highly restricted or intense interests: An interest can become unusually intense, narrow, or difficult to disengage from
• Unusual responses to or interest in sensory input: The nervous system responds unusually strongly or weakly to sensory experience or has unusual interest in particular sensory experiences

These characteristics also must originate in the early developmental period. The differences may not become obvious until a child gets older and the world gets more complicated, but autism doesn't suddenly begin in adolescence or adulthood.

It is also important that these traits meaningfully impact functioning. Just because someone has social quirks and a strong interest in math, does not make them autistic.

I once worked with a child with an acquired neurological injury who liked to line objects up. This was presented to me as evidence that he might also have autism.

After watching him for a while, I realized he was pretending the objects were a train.

Lining things up can be a repetitive behavior associated with autism. It can also be something a kid does because he is playing trains.

Autism is also its own developmental disorder. Someone may develop several very similar symptoms after a traumatic brain injury or other neurological event, but if those symptoms emerged because of the injury, we would understand them in the context of that injury rather than as autism. This is why a good evaluation requires more than recognizing behaviors associated with a diagnosis. We have to understand why the child is doing them, when they began and how they fit into the larger pattern of his development.

Social Communication Is Complicated

Of all the DSM criteria, social-emotional reciprocity may be one of the hardest to explain because most of us don't spend much time consciously thinking about it.

There is an extraordinary amount of choreography involved in ordinary social interaction. We constantly monitor facial expression, body language, tone, timing and the responses of the other person. Most of us do this without consciously thinking about it.

I see what happens when that process works differently fairly often in group therapy.

Imagine that one child shares something devastating. The room gets quiet. There is usually a pause before anyone else speaks. Nobody explained that rule before group started, but most of us intuitively understand it.

An autistic child might immediately ask, “Can I talk now?”

When someone explains why that response was hurtful, he may be horrified. He understood that the other child was sad and cared that the other child was sad. What he didn't recognize was that everyone else expected him to stay silent for a moment to communicate that concern.

Years ago, there was a common idea that autistic people lacked empathy. Experiences like this showed me very quickly that autistic children (or adults) do not necessarily lack empathy. They may simply be less aware of the response patterns that make neurotypical people label others “caring” and “empathic.”

Learning the Rules

Autistic children learn.

If a child doesn't naturally recognize that a hand held up in the air is an invitation for a high five, someone can teach him. Over time, autistic people can learn an extraordinary amount about the social world around them and become very good at navigating it.

But learned social behavior can still require conscious effort.

Imagine an autistic teenager who sang in a choir. He had done a tremendous amount of work learning how to navigate the social world around him. One day after practice, he explained the problem beautifully to his mother.

He could concentrate on singing or he could concentrate on being like the other kids. He couldn't do both.

From the outside, we can look at a socially successful autistic teenager and assume that a problem has disappeared or maybe even assume he isn’t autistic at all. From his perspective, he may have become extraordinarily skilled at compensating for it.

This is part of what people are talking about when they discuss masking in autism, and it creates a difficult question for the adults teaching autistic children.

I don't think the answer is that autistic children should never learn the social conventions of the world around them. In a social world it is incredibly useful to learn how our behavior affects other people. At the same time, it is important to understand what we're asking a child to do.

Think about what it is like when you pose for a photo. You are very aware of where you are looking, where your hands are and what your face may or may not look like. Imagine doing that in every single social interaction.

While teaching social conventions is helpful, insisting on eye contact may produce a child who looks more attentive while actually becoming more nervous and distracted by maintaining nonverbal communication.

Relationships

The DSM also includes difficulty developing, maintaining and understanding relationships.

This is another area where the clinical language can make autistic people sound more socially disinterested than many of the people I've actually known.

I have worked with autistic kids who desperately wanted friends but repeatedly failed to make the social interactions work. That experience can be incredibly painful, particularly as children become teenagers and the social world gets more complicated.

So when I evaluate social development, I am interested in more than whether a child technically has a friend. I want to understand whether the child feels connected to other people and whether those relationships work for him.

That can lead to a different therapeutic goal than simply increasing the amount of social interaction.

Restricted and Repetitive Behaviors

The second major DSM category includes repetitive behaviors, a strong preference for sameness, restricted interests and sensory differences.

Restricted interests are more complicated than simply being really interested in something. Autistic patients have described situations where they know that another person has stopped caring about the subject but still find it remarkably difficult to stop talking about it.

The intensity and rigidity of the interest, and its effect on functioning, matter more diagnostically than whether the subject itself seems unusual.

Sensory differences can also have surprisingly large effects on everyday life.

Imagine that every week you record a podcast in the same room. Same chair, same microphone, same lighting. You know what to expect and your nervous system doesn't have to spend much effort figuring out the environment.

Then someone says, “We're recording downstairs today.”

For most people this is a minor inconvenience. For someone who is already working hard to process the sensory environment, the new room may add a tremendous amount of information before the conversation has even started.

You may as well have been asked to do the podcast in a zero-gravity environment. The task may be the same but your body feels completely different doing it.

This may help explain some of the rigidity we see in autism. A predictable environment reduces the amount of new sensory information and uncertainty a person must manage. In that context, sameness can serve a practical purpose: it makes an already demanding environment easier to navigate.

What a Checklist Can't Tell You

The DSM gives us a reasonably good way to identify autism from the outside.

Much of what I understand about living with autism, however, has come from autistic people explaining what was happening on the inside.

That has occasionally changed my interpretation of the behavior in front of me. A teenager who appears socially competent may be dedicating an enormous amount of attention to accomplishing it. A child who responds awkwardly to another person's sadness may care deeply about that person.

This is one reason it is important to listen to individuals rather than reduce someone’s experience to a diagnosis.

It is also why the diagnostic criteria are a starting point rather than a complete description of a person.

After the Diagnosis

For parents, an autism diagnosis can feel enormous because it immediately raises questions about the future.

Underneath many of those questions is one that parents of children with and without disabilities eventually have to confront:

Will my child be able to navigate the world without me?

Unfortunately, an autism diagnosis can't answer that question.

Autism encompasses an enormous range of abilities and support needs, and children continue to develop after someone hands their parents a diagnostic report.

What the diagnosis can do is help us understand the child more accurately. Ideally, that understanding helps us make better decisions about what to teach, what to accommodate and where a child needs support.

Then we still have to do the difficult work of parenting.

At Direction we often ask parents to think about what they are striving for when raising children.

I hope the children I raise and educate eventually become people who can navigate the world competently, love, persevere and live as independently as possible.

Autism makes us think much harder about what those goals look like, but the heart is still the same.

Autism or not, the first step is simple: show up and love your kid.