Why “High-Functioning” Is Misleading, And Why Teaching Self-Advocacy Matters for Autistic Young People

For many years, labels like “high-functioning” and “low-functioning” have been used to describe autistic individuals. While these terms may appear helpful on the surface, they often obscure more than they reveal.

In practice, “high-functioning” frequently means that a young person’s difficulties are less visible, not that they are absent. Many autistic children and adolescents who are described this way are navigating significant internal challenges, often without the support they need.

This is where a crucial shift is needed: from focusing on outward behaviour and compliance, to prioritising self-advocacy, communication, and autonomy.

The Problem with “High-Functioning” Labels

Functioning labels tend to reduce a complex and dynamic profile into a simplistic category. Research has increasingly criticised these labels for failing to capture the variability in support needs across contexts (Botha et al., 2021).

For example, a child may:

• perform well academically

• communicate verbally

• appear socially competent in structured settings

…but still struggle with:

• sensory overwhelm

• emotional regulation

• executive functioning

• unstructured social interactions

In many cases, these young people are also masking, consciously or unconsciously suppressing their natural responses to meet social expectations.

Masking has been linked to increased anxiety, depression, and burnout in autistic individuals (Hull et al., 2020). When a child is labelled “high-functioning,” these internal experiences are often overlooked, leading to reduced access to appropriate support.

Masking and the Hidden Cost of “Coping”

Masking (also referred to as camouflaging) involves adapting behaviour to fit neurotypical norms. While it may help autistic individuals navigate certain environments, it comes at a cost.

Hull et al. (2020) found that higher levels of camouflaging were associated with:

• increased psychological distress

• identity confusion

• exhaustion and burnout

This means that a child who appears to be “doing fine” may actually be working significantly harder than their peers just to get through the day.

Without opportunities to express their needs, this can lead to:

• emotional shutdowns or meltdowns

• withdrawal

• long-term mental health difficulties

Why Self-Advocacy Is Essential

Self-advocacy refers to the ability to understand and communicate one’s needs, preferences, and boundaries. For autistic young people, this is not just a useful skill; it is foundational for well-being and independence.

Research shows that supporting autonomy and self-determination is associated with:

• better mental health outcomes

• improved quality of life

• increased independence over time (Wehmeyer et al., 2017)

Yet, many autistic children are unintentionally taught the opposite.

They are taught to:

• comply with instructions

• suppress discomfort

• prioritise “fitting in”

Rather than learning how to say:

• “This is too overwhelming”

• “I need a break”

• “I don’t understand”

When self-advocacy is not developed, behaviour often becomes the only available form of communication.

Moving from Compliance to Communication

A neurodiversity-affirming approach shifts the focus from managing behaviour to understanding communication.

Instead of asking:

“How do we stop this behaviour?”

We begin to ask:

“What is this child trying to communicate?”

This aligns with evidence showing that behaviour in autism is often linked to unmet needs, including sensory, emotional, or cognitive demands (Kerns et al., 2016).

When children are given tools to communicate these needs directly, we often see:

• reduced distress

• fewer behavioural escalations

• increased confidence

Practical Ways to Encourage Self-Advocacy

1. Teach the Language of Needs

Many autistic children are not explicitly taught how to express internal states.

Simple phrases can be modelled and practiced, such as:

• “I need help”

• “I need a break”

• “That’s too loud”

Visual supports, scripts, or communication aids can be particularly helpful here.

2. Offer Structured Choices

Choice-making is one of the earliest forms of self-advocacy.

Instead of:

“Put this on”

Try:

“Do you want the blue shirt or the red one?”

This supports:

• decision-making skills

• a sense of control

• engagement

Research highlights that opportunities for choice are closely linked to autonomy and motivation (Wehmeyer et al., 2017).

3. Validate, Don’t Override

When a child expresses discomfort, the response they receive matters.

Instead of:

“You’re fine, keep going”

Try:

“I can see this is hard—what would help?”

Validation builds trust and reinforces that communication is effective.

4. Rethink Independence

Independence is often misunderstood as “doing things alone.”

However, in a neurodiversity-affirming framework, independence means:

having the tools and support needed to participate meaningfully

This might include:

• visual schedules

• sensory supports

• communication systems

True independence includes the ability to ask for help when needed.

A Needed Shift in Perspective

When we move away from labels like “high-functioning,” we begin to see the whole person; not just their outward presentation.

We begin to recognise that:

• visible competence does not equal low support needs

• behaviour is often communication

• autonomy is more important than compliance

And most importantly, we begin to create environments where autistic young people feel safe to say:

“This is what I need.”

Conclusion

Encouraging self-advocacy in autistic children is not an optional extra—it is essential.

It is how we:

• reduce long-term distress

• support identity development

• build genuine confidence

• promote sustainable independence

When we stop asking autistic children to simply cope, and start helping them communicate, everything changes.

References

Botha, M., Hanlon, J., & Williams, G. L. (2021). Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 51(2), 870–873. https://doi.org/10.1007/s10803-020-04425-3

Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., & Mandy, W. (2020). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 50(3), 843–857. https://doi.org/10.1007/s10803-019-04323-2

Kerns, C. M., Newschaffer, C. J., & Berkowitz, S. J. (2016). Traumatic childhood events and autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(11), 3475–3486. https://doi.org/10.1007/s10803-016-2903-y

Wehmeyer, M. L., Shogren, K. A., Palmer, S. B., Williams-Diehm, K., Little, T. D., & Boulton, A. (2017). The impact of the Self-Determined Learning Model of Instruction on student self-determination. Exceptional Children, 83(2), 135–153. https://doi.org/10.1177/0014402916662166

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