"Nothing About Us Without Us" - But Who Is "Us"?

The slogan “Nothing about us without us” has become one of the defining principles of modern disability advocacy. At its core, it expresses an important moral idea: disabled people should not be excluded from decisions that affect their lives.

In many contexts, this principle is both reasonable and necessary. But autism raises difficult questions that the slogan alone cannot answer.

Who exactly is the “us” without whom nothing can be decided? Does it refer primarily to autistic people who can advocate independently? What about autistic people who are nonverbal, severely intellectually disabled,[1] or require lifelong supervision and care? And what happens when the people most visible in public autism discourse are often those least affected by the most severe forms of the condition?

What happens when the people most visible in the public discussion of autism are often the ones least affected by the most severe forms of the condition and who might not have been diagnosed 20 or 30 years ago (Lord 2023)?

These questions have become increasingly difficult to ignore.

[This blog distinguishes between ‘autistic lived experience’, advocacy discourse, and institutional representation, which are often treated as interchangeable but are not.]

Who Speaks for Autism?

Over the past decade, public representations of autism have changed dramatically. Media coverage, conferences, social media advocacy, and corporate campaigns increasingly focus on autistic people who are articulate, independent, professionally successful, and able to describe their experiences publicly.

But they are not the whole story of autism.

Largely absent from these conversations are autistic people who cannot speak, who engage in severe self-injurious behaviour, who require constant supervision, or who will never live independently. Their families often face realities that bear little resemblance to the increasingly dominant cultural image of autism. For them, autism is not simply an identity, a difference, or an alternative cognitive style. It is also a disorder and, in many cases, a profound disability.  

This creates a serious representational problem. The autistic people most able to participate in public debate are often those least affected by the most severe impairments associated with autism. Meanwhile, those with the highest support needs are frequently absent from the very conversations conducted in their name.

The result is a paradox: a movement centred on inclusion can exclude the people least able to advocate for themselves.

The Spectrum Is Not One Experience

Autism is an extraordinarily heterogeneous condition. Researchers including Uta Frith, Francesca Happé, and others have long argued that the spectrum encompasses very different developmental profiles, abilities, and outcomes.

At one end are autistic people who live independently, attend university, maintain careers, and communicate fluently. At the other are individuals who may never develop functional language, may experience severe ‘intellectual disability’, epilepsy, aggression, self-injury, or dangerous wandering, and who require lifelong care.

These differences are not superficial. An autistic university lecturer and a nonverbal autistic adult requiring 24-hour supervision may technically share the same diagnosis, yet their daily realities, support needs, and life trajectories can differ profoundly.

For families caring for severely autistic children or adults, the central concerns are often immediate and practical: preventing dangerous self-injury, managing seizures, ensuring basic safety, obtaining appropriate residential care, and planning for what will happen when ageing parents can no longer provide support.

These realities rarely fit comfortably within narratives that frame autism primarily as identity or difference.

Problems emerge when one section of the spectrum is treated as representative of all autism.

A person whose primary difficulties involve social exhaustion or sensory sensitivity may understandably resist language centred entirely on deficits and pathology. But that perspective cannot automatically be generalised to individuals who cannot communicate basic needs, who injure themselves severely, or who require lifelong institutional or residential care.

Similarly, opposition to treatment-oriented research may appear reasonable from the perspective of someone living independently. It looks very different from the perspective of families who struggle around the clock with self-harm, chronic insomnia, etc.

The difficulty arises when the ‘lived experience’ of the most articulate and independent autistic individuals begins to be seen as the authoritative experience of autism itself.

But autism is not one experience.

This critique is not directed at autistic self-advocacy as such, but at representational imbalance within specific advocacy and institutional contexts where profoundly disabled autistic people are often absent. Thus, the problem is not that autistic adults advocate for themselves. The problem arises when one segment of the spectrum increasingly comes to define autism as a whole.

Any movement claiming to speak for autistic people must also make room for those who cannot speak for themselves.

When Research Becomes “Problematic”

In recent years, research into genetics, biomarkers, and the biological mechanisms associated with autism has become politically controversial in some activist spaces.

The clearest example was Spectrum10K, the largest autism genetics study ever launched in the United Kingdom. The project aimed to investigate genetic and environmental factors associated with autism and related conditions, including epilepsy, intellectual disability, and mental health difficulties.

Following intense online criticism, the project was paused. Critics argued that biological autism research could contribute to eugenics or attempts to eliminate autistic people. Supporters, however, viewed the backlash very differently.

For families living with profound autism, this kind of research matters deeply. They want to understand why some autistic individuals develop relatively mild social difficulties, while others experience severe self-injury, seizures, complete language loss, or lifelong dependency. They want research into communication, sleep disorders, gastrointestinal problems, aggression, epilepsy, and adaptive functioning. They want better interventions, better care, and better long-term outcomes.

To portray these goals as inherently suspect risks silencing families facing the most severe forms of disability.

This is an extraordinary position when viewed in a broader medical context. Research into epilepsy is not considered “anti-epileptic people.” Research into dementia is not viewed as an attack on people with dementia. We do not accuse scientists studying muscular dystrophy of wishing disabled children had never been born.

Why should severe autism be different?

Many families do want research into treatments. They want research into aggression, sleep disorders, sensory problems, gastrointestinal pain, self-injury, seizures, and communication. They want to know why some autistic children lose language, why some are tormented by uncontrollable (and often involuntary) behaviour, and why some require constant supervision.

To present these concerns as morally questionable is itself a form of cruelty.

The Conference Divide

This tension was vividly illustrated by Alison Singer (2022) in a reflection on the Autism-Europe International Congress. She described a conference environment dominated largely by people from the higher-functioning end of the spectrum who nevertheless claimed to speak for all autistic people. Some delegates reportedly reacted with hostility to words such as “patient,” “disability,” and “intervention.” Others criticised presenters online or walked out of talks altogether.

The keynote presentation by Brian Boyd[2] highlighted the divide particularly starkly. Boyd presented two videos illustrating repetitive behaviours in autism. The first showed an autistic adult who had transformed a special interest into employment and who spoke eloquently about social difficulties and sensory preferences.

The second video — preceded by a trigger warning and reportedly met with audible discomfort (“oohs” and gasps) from the audience — showed a profoundly autistic child engaging in severe self-injurious behaviour.

For many families of profoundly autistic children, however, this was not shocking footage. It reflected daily reality. As Boyd argued, these two individuals required fundamentally different forms of support because they faced fundamentally different realities. That distinction matters.

If advocates who claim to represent the entire autism spectrum cannot tolerate discussion of profound impairment, then the people most severely affected risk becoming invisible even within autism advocacy itself.

Singer also described growing pressure toward “neutral” language, with some presenters reportedly altering slides to avoid criticism from neurodiversity activists online.

But scientific and clinical language exists for a reason. There is nothing compassionate about removing the vocabulary needed to describe severe disability, self-injury, dependency, or profound impairment. Sanitising language does not eliminate suffering; it merely makes suffering more difficult to discuss honestly.

Pretending that profoundly autistic people do not exist by erasing the language used to describe their experiences is itself another form of exclusion.

The slogan “Nothing About Us Without Us” begins to sound hollow if the people with the greatest needs are effectively absent from the conversation.

The Autism Conversation That Leaves the Most Vulnerable Behind

Today’s autism discourse increasingly revolves around television representation, workplace inclusion, social masking, identity-first language, and corporate campaigns celebrating “different minds.”

For some autistic people, these conversations are real and important.

But for families living with the most severe forms of autism, they can feel painfully disconnected from reality. Their child is not worried about masking at work. Their son is not navigating office politics. Their daughter is not writing essays about identity-first language. Their reality is often far harsher.

It may involve a child who repeatedly smashes his head against the floor hard enough to risk permanent injury. A nonverbal teenager who runs into traffic, eats from rubbish bins, or wanders away from home. An adult son who cannot speak, cannot live independently, and may require round-the-clock care for the rest of his life.

And yet, increasingly, the people claiming to speak for “the autistic community” are often those least likely to know this reality firsthand.

Some activists and advocates increasingly frame autism primarily as difference rather than disability. Others denounce attempts to study severe autism as “ableist” or describe genetic research as “eugenics.” Parents who speak openly about aggression, incontinence, seizures, or self-injury are sometimes accused of “pathologising” autism or fuelling stigma.

But there is nothing compassionate about forcing families into silence in order to protect the feelings of those who see autism primarily as identity.

There is nothing progressive about telling parents they must not describe suffering because it may offend people whose lives are vastly less impaired.

And there is certainly nothing inclusive about a movement in which only the autistic voices articulate enough to speak publicly are treated as legitimate.

The cruel irony is that some autism advocates describe themselves as marginalised while simultaneously marginalising those with the most severe impairments.[3]

Parents, Families, and the History of Autism Advocacy

The history of autism advocacy did not begin on social media. For more than seventy years, parents of autistic children have fought for autism to be recognised, understood, and supported.

In the mid-twentieth century, many autistic children were officially considered “uneducable” or “unmanageable.” Parents were often advised to institutionalise them and move on with their lives. Many refused.

It should not be forgotten that it was parents of autistic children, together with professionals and researchers, who established the first autism societies, created the first specialist schools, and launched the earliest public awareness campaigns.[4]

They were later joined by autistic adults such as Temple Grandin, Donna Williams, Thomas McKean, and others who shared their experiences and worked directly with families seeking better ways to support autistic children, including those with severe forms of autism.

These parents, professionals, autistic and Asperger syndrome people were not motivated by stigma or hatred. They were trying to secure education, care, dignity, and opportunity for children whom society had largely abandoned.

That history matters because modern autism discourse often treats parents — especially parents of profoundly autistic children — as outsiders whose perspectives are inherently suspect.

But many parents are themselves autistic or display traits associated with the broader autism phenotype.[5] In many families, autism-related traits span multiple generations.[6] 

Parents also experience extraordinarily high levels of psychological strain, particularly when caring for children with severe behavioural or developmental difficulties. Their experiences are not secondary to autism discourse. They are part of it.

Who Belongs to “Us”?

A meaningful autism movement cannot be built around only one section of the spectrum.

It must include autistic people who advocate independently, but it must also include nonverbal autistic individuals, severely disabled autistic people, parents, siblings, carers, clinicians, and researchers.

It must allow room for dignity without denying disability, for acceptance without romanticisation, and for advocacy without erasing the most vulnerable.

Some autistic people can explain their experiences publicly, participate in conferences, write books, and influence policy debates.

Others remain entirely dependent on parents, carers, clinicians, and support systems throughout their lives.

A serious and humane autism discourse must recognise both realities.

The people with the greatest needs should not be pushed to the margins of their own movement because they cannot speak for themselves.

If autism advocacy cannot make room for the most marginalised among autistic individuals, their families, and those whose perspectives diverge from dominant narratives, then the slogan “Nothing About Us Without Us” requires serious clarifications when applied to a spectrum as heterogeneous as autism. Or it should be abandoned altogether.

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[1]’Intellectual disability’ in autism is different from ‘intellectual disability’ in e.g., Down syndrome. Donna Williams coined the term ‘functional disability’ for autism. 

[2] Brian Boyd is William C. Friday Distinguished Professor in the UNC School of Education and director of the Frank Porter Graham Child Development Institute at the University of North Carolina at Chapel Hill

[3] Estimates of profound autism prevalence is about 33%

[4] In the 1960s, in Western Europe a strong movement towards understanding of autism and needs of autistic children could be seen. In many countries there were established Societies for Autism. The initiators were parents of autistic children and interested professionals. The first Autistic Society in the world - the National Autistic Society (NAS) - was formed in 1962 in England by a group of parents.

In the same year, 1962, Autism Denmark was created. After that Societies for Autistic Children have been established in other countries.

In the early 1960s, a group of parents in North Carolina led by Eric Schopler and Robert Reichler of the University of North Carolina founded the first state-wide Division TEACCH – educational programme providing services to autistic children and adults and their families

The first parent-initiated day-school for autistic children was established by Harriet Mandelbaum, a mother of an autistic boy in 1952 in the USA.)

Another pioneer in education of autistic children was Jeanne Simons. She was born in Belgium, educated in The Hague, the Netherlands. In 1940, she emigrated to the USA where she started working with autistic children already in 1949 in Children’s House in Washington; and in 1955 she founded the Linwood Centre for children with early infantile autism in Ellicott City.

In 1964, an American psychologist Dr. Rimland (a father of an autistic son), wrote a book – Early Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior that became a turning point in changing the approach to the problem of autism. In 1965, he founded a national organisation dedicated to the education and welfare of autistic children - The National Society for Autistic Children (NSAC). (Now it is known as the Autism Society of America - ASA). In 1967, Dr. Rimland established and became the Director of the Autism Research Institute (ARI), and the editor of a quarterly newsletter - the Autism Research Review International (ARRI) which corresponds with thousands of parents and professionals throughout the world and maintains the world’s largest data base on children with autism.

In 1970, two fathers of autistic sons - Victor Winston, a publisher, and Herman Preiser, a naval engineer, founded the Journal of Autism and Childhood Schizophrenia (now the Journal of Autism and Developmental Disorders) which has become an invaluable source of information on autism and research in the field.

[5] Autistic disorder (DSM-IV) is highly heritable (see e.g., Ryan & Heron 2023; Nayar et al. 2021; Dayal et al. 2026; Losh et al. 2011; 2017; Murphy et al. 2000; Bernier et al., 2011; Mullin et al. 2026; El-Bouhali-Abdellaoui et al. 2024). Research suggests that ASD risk arises through a combination of inherited genetic susceptibility, de novo mutations, and environmental or epigenetic mechanisms. (Reichenberg et al. 2026; Mouat & LaSalle 2022).

[6] In some families, autism may extend across multiple generations (e.g., Wilfert et al. 2021; Mouat and LaSalle 2022; Frye et al. 2025; Reichenberg et al. 2026).