The idea of the “autism spectrum” is widely used in diagnosis, education and public discussion. First developed by the psychiatrist Lorna Wing in the 1980s, the term was intended to reflect the wide range of autistic experiences and needs.
But a growing body of research is questioning whether the concept still helps us understand autistic lives.
We are autistic researchers of communication, education and neurodiversity. Our research focuses on paying attention to how people express knowledge and experience when communication does not fit mainstream expectations, particularly when it goes beyond spoken language.
Across this work, one finding is consistent: both autistic and non-autistic people communicate meaningfully in various ways. But this variety is often overlooked or misunderstood by traditional models of autism.
These models tend to come from cognitive science and clinical practice, where autism is defined primarily as a communication “disorder”. They suggest that autistic people have difficulty speaking, maintaining eye contact, or engaging in back-and-forth conversation.
Diagnosis is typically based on external observation by doctors, rather than on autistic people’s own accounts of their experience.
When different perspectives are dismissed
Critics argue that this approach reflects what is known as “neuronormativity”. This is the belief that there is a standard or “normal” way to communicate, think and behave. It is rooted in an assumption that language, especially speech, is what makes us fully human. Therefore, when people communicate differently, their knowledge can be treated as less valid or harder to access.
Autistic scholar M. Remi Yergeau has argued that autism has often been framed as a “narrative condition” by cognitive scientists. In other words, it is assumed that autistic people are unable to express meaningful self-knowledge.
If someone’s way of communicating is already judged incoherent or unintelligible, their perspective can easily be dismissed. This means autistic people are not considered to be reliable sources of knowledge about their own lives.
Our research, and that of other autistic scholars, challenges this assumption.
Communication is more than words
There is increasing evidence that autistic people express themselves in a wide range of ways that are not always recognised as communication. Chris’s research, for example, shows how autistic people often communicate through deep engagement with particular interests. These interests can be a way of expressing identity, connection and meaning, rather than simply being a “symptom”.
Many autistic people also use rhythmic or repeated movement and sound – often referred to as “stimming” – or repetition of words and phrases, known as echolalia. These forms of expression can communicate comfort, distress, humour, joy or focus. They can also provide sensory regulation or pleasure. They may not fit conventional ideas of language, but they are meaningful.
However, because of the deeply ingrained belief that “real” communication must be verbal, these forms of expression have received little attention within mainstream science. Yet they point to something important: communication and knowledge are not just about words. They are also about feeling, and the things we cannot say.
Research by the neuroscientist Antonio Damasio has shown that emotion is not separate from thinking but fundamental to it. Feelings shape attention, decision-making and understanding. In this sense, feeling is part of how we know the world. If we are to take people’s knowledge about themselves seriously, we must pay attention to it.
Our research builds on this idea, showing that communication and knowledge are not limited to what can be clearly spoken or measured.
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From diagnosis to paying attention
Clinical diagnosis remains necessary because it enables access to support and services. But diagnosis alone may not fully capture how autistic people experience and communicate their needs.
We suggest a shift in emphasis. Rather than asking, “What is wrong with this person?” we may ask, “How can we pay attention to this person?”
Paying attention means taking feeling seriously as a way of knowing and recognising that language has limits. Research by Lou and colleagues has found that when spoken language is not available or not sufficient, other forms of interaction – such as art, play, care and simply being with others – can become more meaningful. These forms of communication are often harder to observe or measure than language, which may explain why they have received less attention in traditional research.
But they are fundamental to how many people, autistic or not, experience connection and understanding. Recognising this has practical implications. It means that decisions about education, support and policy are shaped by how autistic people actually experience the world.
In schools, this could lead to better identification of barriers and more responsive teaching practices. In policy, it could inform more effective approaches to special educational needs provision, diagnosis and employment support.
More broadly, it suggests that expanding how we understand communication could benefit everyone. All of us – regardless of whether we are autistic – have experiences that are difficult to express in words.
Read more:
Why it’s time to rethink the notion of an autism ‘spectrum’
The concept of the autism spectrum was originally intended to reflect diversity. But if it continues to rely on narrow assumptions about communication and knowledge, it may not fully capture that diversity in practice. Our work is part of a growing area of research exploring how to better recognise different forms of expression and understanding, including those that fall outside conventional definitions of language.
Taking these forms seriously does not mean abandoning science. It means broadening what we consider to be valid evidence, and who we recognise as knowledgeable about autistic experience. If we do this, we may find that approaches designed to support autistic people can support many others too.
Lou Harvey has received funding from the UK Arts and Humanities Research Council, the former Higher Education Funding Council for England, and the Society for Research into Higher Education.
Chris Bailey received academic funding from the UK Literacy Association (UKLA) to to total of £1400 for the Ruling Passions project that is mentioned in this article.
