What Is Autism Spectrum Disorder?

Ask the internet “What is autism?” and you’ll quickly find definitions, statistics, diagnostic information, and lists of common traits. Those things are important, but they only tell part of the story.

I’ve worked in educational services for 20 years. Here are three big things I’ve learned about autism, the people who experience it, and the way we support them.

1. “If you’ve met one person with autism, you’ve met one person with autism”

This well-known quote is usually credited to Dr. Stephen Shore. I’ve probably used it in almost every autism training I’ve given over the years, whether speaking to parents, professionals, students, or the public. I keep using it because it’s true. Autistic people are incredibly different from one another.

Some speak fluently, while others communicate mainly through augmentative and alternative communication (AAC). Some live independently, have careers, or raise families. Others need significant help with communication, safety, personal care, and other aspects of daily life. Many autistic people have a combination of independence and support needs that doesn’t fit neatly into either description.

There are also enormous differences in how autistic people experience the world. Everyday sounds or textures may be overwhelming for one person, while another may actively seek out strong sensory experiences. Someone can have significant strengths in one area while needing substantial support in another. Autism also frequently occurs alongside conditions such as intellectual disability, ADHD, epilepsy, and anxiety.

This is why a textbook definition of autism can only tell us so much. Two people can meet the same diagnostic criteria and still have remarkably different abilities, challenges, and support needs.

2. Autism can be a difference, a disability…or both

The official diagnostic name from the DSM-5-TR is Autism Spectrum Disorder. To receive an autism diagnosis, a person must show certain differences in social communication along with restricted or repetitive behaviours, interests, or activities. How those criteria affect someone’s life, however, can vary tremendously.

Some autistic people have many areas of strength and need relatively little support. Their challenges may be more closely related to sensory experiences, social expectations, or environments that are difficult for them to navigate. Someone with this experience of autism may see it mainly as a difference and an important part of who they are.

For others, the reality is that autism is profoundly disabling. Some people identified as having Level 3 autism, or what is sometimes called “profound autism,” need significant support with communication, safety, and everyday activities such as eating, dressing, or using the toilet. Some may have little or no reliable speech and use augmentative and alternative communication (AAC), with widely varying levels of independence as communicators. Severe self-injury, aggression, or property destruction can create serious safety concerns, and some people will need substantial support and supervision throughout their lives.

Most of my career has been spent supporting individuals with significant support needs. What I can tell you is that needing substantial support does not change the fact that a person has preferences, relationships, strengths, and the right to have a say in their own life. At the same time, describing autism only as a “difference” can fail to capture the very real disability that some autistic people experience and that their families see every day.

That doesn’t take away from the experience of autistic people who view autism as an important part of their identity rather than primarily as a disability. Both experiences are real. Autism can be a difference, a disability, or both.

3. The goal isn’t to make someone less autistic – it’s to help them live a better life

The way we think about autism intervention has changed considerably during my career. Today, there is much greater attention to quality of life, trauma-informed care, neurodiversity, autonomy, and the perspectives of autistic people themselves. I think much of this has pushed the field in an important direction by making us look more carefully at the goals we choose.

Eye contact is a good example. It may be expected in many social situations, but that alone is not a good reason to require an autistic person to make eye contact. The same is true for harmless repetitive movements, often called “stimming.” A behaviour does not automatically need to change simply because other people find it unusual.

There are also many areas where intervention can make a meaningful difference. Developing a reliable way to communicate can give someone greater control over their life. Learning daily living skills can increase independence and open up new opportunities. Effective treatment for severe self-injury or aggression can improve safety and quality of life. There are plenty of good reasons to teach new skills or address behaviours that create real barriers in someone’s life.

Providing support early can also be valuable. Early intervention can help children develop useful skills while helping families better understand and support their child. That doesn’t mean there is a window that suddenly closes. Autistic teenagers and adults continue to learn and can benefit from appropriate support throughout their lives.

The autism field will continue to change as we learn more, and practices should evolve along with it. But evidence still matters. An intervention may sound caring, natural, or appealing and still have little evidence that it actually works. Families deserve honest information about what we know, what we don’t know, and what the research tells us about the choices available to them.

After 20 years in this field, this is probably where I’ve landed: I’m much less interested in whether an autistic person looks less autistic. I care about what is actually happening in that person’s life. Can they communicate in a way that works for them? Do they have greater control over their own life and opportunities to do things that matter to them? Are they safe and supported?

Those are the outcomes that matter to me.