Whose Voice Is Heard in the Autism Conversation When Not Everyone Can Speak for Themselves?
Updated: 7 days ago
In recent years, the principle of “Nothing about us without us” has rightly become increasingly important in discussions about autism. Autistic people must be able to participate in conversations, research, service planning and decision-making that concern their own lives. Historically, far too much has been said and decided on their behalf without asking what they themselves think or need, so this change has been necessary.
But alongside this principle is a more difficult question that receives much less attention: what happens when a person cannot participate in that conversation themselves?
A profoundly autistic person may be non-speaking, have a significant intellectual disability and be completely dependent on other people in everyday life. They may not be able to write a statement, take part in a discussion, comment on a research proposal or explain on social media what kind of services they need. They may not even be able to tell an unfamiliar person that something hurts, that they are afraid or that they do not want something.
This does not mean that they have no opinions, preferences, wishes or right to influence their own life. It means that understanding those things requires different methods and often people who know them well.
This creates a tension in the autism conversation that, in my view, cannot be resolved simply by choosing one side. The more strongly we emphasise that autistic people should be able to speak for themselves about autism, the more important it becomes to make sure that the people who cannot participate in public discussion do not disappear from it entirely.
One Autistic Person Cannot Represent the Entire Spectrum
Nor can the solution simply be to listen to another autistic person on behalf of someone with profound autism.
The autism spectrum is so broad that the lived experience of a speaking autistic adult who lives independently cannot tell us what it is like to live as a non-speaking person with a significant intellectual disability who depends on round-the-clock support. In the same way, the life of a profoundly autistic person cannot tell us what it is like to live independently as an autistic adult, study, work or try to navigate a world in which your disability may not be visible to others at all.
Both are autism. Both experiences are real, and the rights of both groups matter. But neither can automatically represent the other simply because they share the same diagnostic label.
This may be one of the most difficult parts of the current autism conversation. We rightly want to hear more directly from autistic people about their own experiences, but public discussion will inevitably include more of the people who are able to describe those experiences. Unless we consciously recognise this, the public understanding of autism can easily become shaped primarily by those who are able to participate in public discussion.
Then the quietest people do not simply remain quiet. They become invisible.
Who Speaks When the Person Cannot?
When we talk about profound autism, parents, siblings, other people close to the person and professionals inevitably become part of the conversation.
We sometimes say that a parent or another person close to a non-speaking person is their “voice”. I use this expression myself at times because, in a simple way, it describes a situation in which someone has to bring forward the needs and rights of a person who cannot do so verbally or participate in public discussion themselves.
When examined more closely, however, the expression is not perfect. A parent cannot know everything another person is thinking, and years of living together do not automatically give anyone the right to make every decision on another person’s behalf. People close to someone can also interpret things incorrectly. Anyone who has lived for years with a non-speaking person probably knows the experience of being completely convinced about what a certain behaviour means, only to realise later that they were wrong.
Perhaps it is more accurate to say that the role of someone close to the person is to help that person’s own voice be heard through whatever means they have, and to defend their interests when they cannot do so themselves.
A voice does not mean speech alone. It can be a picture, a communication device, a gesture, a gaze, a facial expression, an action, a choice, a refusal or a change in behaviour. Over the years, someone close to the person may learn to notice things in these forms of communication that an unfamiliar person does not yet see.
At the same time, someone close to the person may have years or decades of knowledge gained from observing a person whose communication, pain, preferences, fears, overload and smallest ways of expressing themselves they have learned to understand every day. That knowledge is not infallible, but neither is it meaningless.
At its best, professional knowledge, the autistic person’s own communication and the long-term knowledge of those closest to them do not compete with one another. They complement one another.
We Must Be Able to Talk About Every Part of Profound Autism
The reality of profound autism can include things that are difficult to talk about in a beautiful way.
It can include self-injury, aggression, elopement, pica, faecal smearing, incontinence, severe communication difficulties and complete dependence on other people. Some people need constant supervision for their own safety, some will never be able to live without round-the-clock support, and some cannot even communicate verbally that they are in severe pain.
Talking about these things does not diminish a person’s value, nor does it mean seeing their life as a tragedy. The same life can contain enormous amounts of love, humour, joy, closeness and ordinary everyday moments. A person can be happy and deeply loved while also needing an extraordinary amount of support. These things are not mutually exclusive.
Acknowledging significant limitations in functioning does not mean rejecting autism either. Accepting a person does not require us to remain silent about the things they find difficult.
If we cannot talk about these realities because they make the autism conversation uncomfortable, the people with the highest support needs may ultimately pay the price. If their reality is not recognised, it is less likely to be adequately reflected in research, services, staffing or decision-making.
We Must Also Be Able to Talk About the Experiences of Families
Talking about the experiences of parents and other people close to someone with profound autism sometimes creates another tension. It is absolutely right to point out that a parent’s experience of autism is not the same as the autistic person’s own experience of being autistic. But parents have their own experience too, and that does not stop being real.
Being constantly on call, broken nights, endless anticipation and planning, fighting for services, managing safety and worrying about the future are part of life for many families of profoundly autistic people. It should be possible to talk about these things without automatically interpreting that conversation as blaming the autistic person for the difficulties experienced by their family.
In the same way, defending the rights of an autistic person does not mean that their family should be expected to cope indefinitely or that all care should fall on those closest to them. A good support system protects both.
The Autism Conversation Does Not Need One Single Voice
Perhaps part of the problem begins with the idea that the autism spectrum should have one shared voice. People with the same diagnosis can differ enormously in their ability to function, communicate, understand, live independently and manage everyday life, as well as in the amount of support they need. There are certainly shared experiences, but alongside them are realities that can be very far apart.
That does not need to be a threat to the autism community.
Recognising different needs does not mean placing people in a hierarchy of human worth. Talking about profound autism does not take anything away from other autistic people, just as defending the rights of other autistic people does not diminish the rights of those with profound autism.
Perhaps the autism conversation does not need to find one voice that represents everyone. Instead, it needs to learn to make room for very different voices under the same diagnosis, including people whose voices may never be heard directly in public discussion.
The hardest part is not deciding who is allowed to speak. It is building a conversation in which nobody disappears simply because they cannot speak in the same way as everyone else.
Written by Satu Väänänen, Lainattu Rauha® (Borrowed Peace), Finland
I have lived the everyday life of a profoundly autistic person as a mother for years, around the clock, and have also worked as a psychiatric nurse and in child protection.
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