What Does It Mean to Be Autistic? Voices from the Spectrum

Michael Mohan

August 29, 2025

What Does It Mean to Be Autistic? Voices from the Spectrum shares real stories that break myths and celebrate neurodiversity.

When discussing autism, one principle stands at the forefront of authentic understanding:

“Nothing About Us Without Us.”

This powerful motto comes from the Autistic Self Advocacy Network (ASAN). It emphasizes a simple truth: meaningful conversations about autism must include the voices of autistic people themselves.

For too long, conversations about autism have been dominated by others. Researchers, clinicians, and families have spoken about autistic experiences without centering actual autistic voices.

Today, we’re changing that narrative. We’re exploring what it truly means to be autistic through the lens of those who live this reality every day.

The Numbers Tell a Story

Recent CDC data reveals important trends:

Autism prevalence has reached 1 in 31 children (3.2%) among 8-year-olds in 2022
This represents millions of individuals with rich, complex experiences
These aren’t just statistics—they represent real people who deserve to have their stories heard

Understanding Autism: Beyond Stereotypes

What Is Autism Really?

According to the Autistic Self Advocacy Network:“Autism is a developmental disability that affects how we experience the world around us. Autism is a normal part of life, and makes us who we are.”

This definition represents a fundamental shift. It moves away from medical model descriptions that focus solely on deficits.

Key truth: There is no one way to be autistic.

Some autistic people can speak
Some need to communicate in other ways
Some have intellectual disabilities, others don’t
Some need lots of daily help, others need very little
All of these people are autistic—there’s no “right” or “wrong” way to be autistic

The Beautiful Diversity of Our Community

Autistic people are everywhere. We always have been.

We are:

People of color
Immigrants
Part of every religion
From every income level
Every age group
Women, men, and nonbinary individuals
LGBTQ+ community members
Often many of these identities at once

Recent Changes in Recognition

The data shows exciting shifts in autism identification:

ASD prevalence among Asian, Black, and Hispanic children increased by at least 30% from 2018 to 2020
For the first time ever, autism identification rates in children of color exceeded those of white children:
- Asian/Pacific Islander: 3.3%
- Hispanic: 3.2%
- Black: 2.9%
- White: 2.4%

This suggests better awareness and access to diagnosis in historically underserved communities.

The Autistic Experience: How We Navigate the World

Sensory Experiences

Many autistic people experience the world with heightened intensity. Imagine this scenario:

Hearing every conversation around you at the same volume
Simultaneously hearing background noises at intensified levels
Smelling someone’s lunch from across the room
Feeling the rough texture of your chair
Being bothered by the tag in your shirt
Being dazzled by sunlight others find normal

Now add this: Having a different understanding of language that takes longer to process.

The result? Processing all this information in real time is exhausting.

How We Communicate

Communication looks different for autistic people:

We might:

Use echolalia (repeating things we’ve heard)
Script out what we want to say
Use computers, letter boards, or picture systems (AAC)
Communicate through behavior and actions

Important truth: Not every autistic person can speak, but we all have important things to say.

Movement and Physical Coordination

Our bodies work differently:

Fine motor skills and coordination can be challenging
It can feel like our minds and bodies are disconnected
Starting or stopping movements can be difficult
Speech requires lots of coordination and can be especially hard
Voice control might be challenging

Real Stories: Personal Narratives from the Spectrum

A Journey of Growth and Advocacy

“Growing up as an autistic individual, I went through a lot of hardships.”

This quote from an autistic self-advocate reflects a common experience. But hardships often become the foundation for powerful advocacy and community building.

One autistic researcher shared:“Through autism self-advocacy, I have found my voice, developed the ability to speak at the highest political level and learnt about disability rights and responsibilities.”

The Problem with Awareness Campaigns

An autistic advocate explains the current challenge:“The din of autism awareness has gotten so loud that the voices of real Autistic people sometimes can’t be heard above it.”

The solution? Instead of just donating to awareness campaigns, people should:

Sit down and talk with autistic people in their communities
Listen to our experiences
Move toward acceptance rather than just awareness

Breaking Down Stereotypes

When people think of autism, they often reference movies:“If you ask a person about Autism, perhaps they might laugh, or look at you like you have two heads, or say, ‘You mean like, Rain Man or Forrest Gump?'”

But here’s the truth: Autism is not black and white. As one autistic person beautifully put it:“Autism is rather colorful. Autistic brains are so colorful! And we are all so different from each other despite our commonalities.”

Employment: The Reality for Autistic Adults

The Statistics Tell Two Stories

The employment picture is complex:

Research findings:

One study found 61% of autistic adults employed, 39% unemployed
Broader estimates suggest unemployment rates of 85-90%
Only 32% of autistic adults are employed
Compare this to over 70% of non-autistic adults

Workplace Challenges

Research reveals important insights about social experiences:“Autistic people reported high social interest but experienced high rates of loneliness.”

Dr. Noah Sasson explains:“We tend to think of social difficulties in autism as an individual impairment. But social interaction is a two-way street, and their social challenges are often affected by the judgments and social decisions made by those around them.”

Key finding: Autistic people can tell when they’re being treated poorly.

Our Workplace Strengths

Despite barriers, autistic employees bring significant value:

Proven strengths include:

Strong focus abilities
Exceptional problem-solving skills
Unparalleled attention to detail
Pattern recognition abilities
Innovative thinking

Real-world impact: James Mahoney from J.P. Morgan Chase reports that autistic employees were 140% more productive than their peers.

The Neurodiversity Movement: Changing the Conversation

Core Principles

The neurodiversity movement believes:

Brain-based disabilities like autism are a normal part of human differences
Autism should be accepted and supported, not “cured” or eliminated
No two brains are exactly the same
Everyone has strengths and challenges
There’s no such thing as a “normal” brain

Historical Development

The movement has roots in the 1990s:

The internet provided new ways for autistic people to connect
Text-based communication became more accessible
Autistic communities formed online
Self-advocacy movements grew
The assertion that “autism is a valid way of being” emerged

Self-Advocacy: Building Our Community

The Power of “Nothing About Us Without Us”

This principle means:

Autistic people must be involved when autism is discussed
Decisions made without autistic input are usually harmful
We need to be included in policy-making
Our voices matter in conversations about our lives

Building Skills and Networks

Self-advocacy creates opportunities to:

Mentor young advocates
Develop confidence and courage
Build support networks
Create sustainable communities of care

Organizational Impact

The Autistic Self Advocacy Network works on:

Public policy initiatives
Research reform
Community outreach
College advocacy
Employment initiatives
Cross-disability collaboration

Mission: Autistic people are equal to everyone else and are important, necessary members of society.

Research: Including Autistic Voices

Moving Beyond Traditional Models

Research is changing to:

Engage with autistic viewpoints
Move away from trying to make us “normal”
Focus on environmental fit rather than fixing us
Measure outcomes we actually care about
Form partnerships with autistic people

The Value of Lived Experience

Autistic adults bring unique expertise:

We can explain what a good autistic life looks like
We know what might have helped us
Many of us are parents of autistic children
We have wide networks and varied experiences
Our insights are irreplaceable

Looking Forward: From Awareness to Acceptance

What We Really Need

“Autism awareness is useless to autistic communities. What we need is acceptance.”

True acceptance means:

Recognizing autistic adults as authorities on our own neurology
Accepting what we define as our community’s major needs
Seeing us as fully realized individuals
Understanding we don’t need to act exactly like non-autistic people

Creating Inclusive Communities

The path forward requires non-autistic people to:

Think outside the box
Recognize that different ways of perceiving the world aren’t bad
Learn to appreciate autistic people
Work together to make the world better for everyone

Supporting Us Throughout Life

Remember:

All autistic people experience autism differently
We all contribute meaningfully to the world
We all deserve understanding and acceptance
Our needs and strengths may change over time
Our fundamental worth and potential remain constant

Conclusion: Honoring Our Voices

Understanding autism requires listening to autistic people ourselves.

Through our voices, you learn:

Autism isn’t a tragedy to cure or deficit to fix
It’s a different way of experiencing the world
We face challenges, but we also have unique strengths
We deserve respect, support, and inclusion

The Path Forward

Moving forward requires:

Commitment to “Nothing About Us Without Us”
Centering autistic people in all conversations about us
Including us in policies and decisions that affect us
Building a world that truly embraces neurodiversity

Our Vision

We envision inclusive communities where every autistic person can:

Flourish as their authentic self
Have their voice heard and valued
Receive the support they need
Contribute their unique gifts to the world

The future is bright when autistic voices lead the way.

References

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