When the Research Is About Me

On Autism, Knowledge, and the Right to Participate

I read a great deal about autism. I do so partly because I am autistic myself, and partly because, throughout a long academic life, I have been concerned with how knowledge is created.

The two perspectives can no longer be kept entirely apart.

When I read research on autism, I am not merely reading about a scientific phenomenon. I am also reading about people like me.

That is why a recent article in Science left me uneasy.

The article concerns the U.S. Interagency Autism Coordinating Committee, IACC, which has adopted a strategic plan for autism research, treatment, and public services through 2029. The plan recommends a substantial increase in research investment and places greater emphasis, among other things, on regression in children and on environmental, biological, and genetic causes of different forms of autism.

In itself, this need not be problematic. Regression exists. Some children lose abilities they previously had, and researchers still know too little about why this happens. Catherine Lord and Sally Ozonoff, two prominent researchers cited in Science, do not dismiss the need for further research into the phenomenon. On the contrary, they point to important questions that remain unanswered.

The problem lies elsewhere.

It concerns who gets to decide which questions should be asked.

After Robert F. Kennedy Jr. became U.S. Secretary of Health and Human Services, the public members of IACC were replaced. Previously, this part of the committee had included, among others, researchers and representatives of major autism organizations. The number of members who are themselves autistic was reduced from seven to three. According to Science, several of the new members have ties to vaccine-skeptical organizations or support autism treatments that lack solid scientific evidence.

This is where my unease begins.

Not because research should not investigate the causes of autism. Science must of course be free to study genetics, immunology, environmental influences, and developmental trajectories.

But research never takes place entirely outside history and politics.

When a health secretary who has publicly claimed that vaccines may cause autism reorganizes the committee that advises on the direction of autism research, the questions acquire a different resonance. The plan does not explicitly mention vaccines. Yet critics argue that the idea of “triggers” runs beneath the surface, and several committee members have themselves said that they believe vaccines triggered regression in their own children.

This is where the distinction between science and research policy becomes important.

A politician does not need to tell researchers what result they should arrive at. It may be enough to influence which questions receive funding.

The question comes before the answer.

Whoever gets to define the question has already gained considerable influence over the knowledge that will later be produced.

Discovering Yourself in the Research Object

My reaction to this is not merely a matter of principle or philosophy of science.

It is also personal.

What is peculiar is that I myself have spent much of my life on the side of the table usually occupied by the professional.

I worked as a social worker. Later I became a teacher, researcher, and professor. I studied human experience, interpreted interviews, wrote academic texts, and taught students how knowledge about human beings can be developed.

I did all of this before I knew that I was autistic.

Only late in life did I acquire a concept that cast new light on experiences I had already lived with for decades.

This creates a peculiar doubleness when I now read autism research.

I know the researcher’s gaze. I have used it myself.

But I also know what it is like suddenly to find myself on the other side of that gaze.

What was once a field of research now also concerns me.

That does not mean that I retrospectively interpret my entire life as a consequence of autism. That would be just as reductionist as ignoring autism altogether. I became a social worker, teacher, and researcher for many reasons. I lived a life that cannot be reduced to a diagnosis.

But the diagnosis changed the perspective.

It made certain experiences intelligible in a new way. It also made me see more clearly how much can disappear when a person is primarily described from the outside.

Science can record behavior, measure cognitive functions, examine the brain, and analyze genetic differences.

All of this can produce important knowledge.

But none of these investigations, on their own, can tell us what it is like to live an entire life with a particular way of experiencing the world without knowing what it is called.

That knowledge exists only in the life that was lived.

Who Carries the Knowledge?

This is why I react to the reduction in the number of autistic members on the American committee.

Not because autistic people alone should determine what autism research ought to investigate. Lived experience grants no special authority to settle genetic, neurobiological, or epidemiological questions.

But it does provide access to something the researcher cannot simply observe from the outside.

Parents possess one kind of knowledge. Clinicians another. Researchers a third. Autistic people possess experiences from within that cannot be replaced by the other perspectives.

None of these voices is sufficient on its own.

This becomes especially important because autism does not describe one uniform kind of life. I cannot represent a child with extensive support needs. Nor can such a child’s experience serve as a model for my life.

Diversity is not an argument against autistic participation.

It is an argument for more of it.

Horizons That Must Meet

Here Gadamer helps me formulate what is at stake.

For Gadamer, understanding is never merely the neutral registration of an object. We always enter into understanding with a historically formed horizon — our experiences, concepts, questions, and prejudgments in the original sense of the word. This applies to the researcher just as much as to the person being researched.

Understanding emerges when horizons are allowed to challenge and expand one another. Gadamer called this Horizontverschmelzung — the fusion of horizons.

This does not mean that the perspectives become identical.

The researcher should remain a researcher. The autistic participant should not pretend to be a neurobiologist simply because he knows his own life. But neither can the researcher assume that the discipline’s existing concepts have already determined what is important to understand.

If one party has a monopoly on the questions in advance, the encounter has been limited before it has even begun.

Gadamer’s idea of Wirkungsgeschichte — historically effected consciousness — is also relevant here. We do not stand outside history when we investigate the world. History is at work within our very understanding.

Autism research, too, has such an effective history.

It carries with it earlier ideas about deviance, deficit, treatment, normality, and causation. New research questions never emerge on entirely untouched ground. That is why we should be particularly attentive when political actors attempt to determine which questions should now come first.

Participation, therefore, is about more than representation.

It is about opening the horizon of understanding itself.

Less Than a Day

There is one moment in the Science article that makes all of this very concrete.

IACC had received more than 5,200 public comments on the plan. Committee members were given them less than a day before the meeting at which the matter was to be considered. An AI-assisted analysis was used to summarize the material. Several federal members protested against the procedure.

Among them was Scott Robertson, who is himself autistic and represents the U.S. Department of Labor.

He said that his autism made it difficult for him to process such a large amount of material in such a short period of time. He did not feel that he had been given equal access to the decision-making process. Thirteen major autism organizations had also asked for more time.

The committee nevertheless proceeded to the vote.

A committee charged with shaping the future of autism policy and research was therefore unable to give an autistic member the time he said he needed in order to participate on equal terms.

It is difficult to imagine a clearer image of the problem.

He was in the room.

But being in the room is not necessarily the same as being allowed to participate.

Research With, Not Only On

I am not afraid of research on autism.

I want more of it.

I want to know more about genetics, development, the brain, sensory processing, and why some children lose abilities they once had. I want to know more about why some autistic people require extensive support throughout their lives, while others live independently.

But research should not only ask what is different about us.

It should also ask what matters to us.

That is the difference between research on people and research with people.

The first can produce excellent science.

The second can make science better able to know which questions are worth asking.

This is what troubles me about the developments in the United States. Not primarily the sums of money to be allocated or any one particular research program, but the direction now being set and who is allowed to help set it.

Throughout a long professional life, I have been one of those who asked the questions.

Now I know that I also belong to the group the questions are asked about.

Perhaps that is precisely why this affects me so deeply.

I want to contribute to our knowledge of autism.

But I do not want merely to be what that knowledge is about.

I also want to participate in the conversation about what is worth knowing.

Reference:

Reardon, S. (2026, August 31). In autism advisory committee’s funding plan, critics see a veiled antivaccine focus. Science. https://doi.org/10.1126/science.zf0u9eh