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Opinion / Columnists / Community concerns

To partner with autism community, welcome dissenting opinions

by  /  10 October 2017
Editor's Note

Spectrum’s house style is to refer to ‘people with autism’ rather than ‘autistic people.’ But we made an exception in this instance, because the author strongly prefers identity-first language.

It is rare these days to find an autism researcher who does not proclaim the value of advice from the autism community. In fact, consultations with people on the spectrum and their families are now the norm in autism research.

Community concerns

Bridging science and life on the spectrum.

This new normal reflects a growing consensus that these conversations can help generate knowledge that is useful and meaningful to autistic people and their families.

There are also financial incentives to engage with the autism community: Most funders require evidence that autistic people and their families provided input on a proposed project.

Despite the widespread appreciation that these partnerships are important, there is limited understanding of how they should function. This raises the risk of tokenism, in which there is an illusion of collaboration without autistic people having any real influence on the research that affects them.

To improve the lives of autistic people and their families, researchers must interest themselves in what autistic people and their families truly need and want. Only by engaging in sincere and sometimes challenging discussions can we ensure that the field is making real progress.

Power play:

Examples of tokenism abound in everyday life. Allow me to digress briefly to illustrate this point. I am a commuter who relies on a particular train company to take me to and from London, where I work. Often, the trains are disrupted, making me late for work or getting home. This leaves me feeling, to put it politely, frustrated.

The train company is assiduous in regularly seeking my feedback on their service; company officials also make a great display of acknowledging and empathizing with the complaints I occasionally make. They assure me that my opinion is valuable in helping them improve their service — that my voice is being heard.

But in reality, I have no influence whatsoever on the company. Its officials ignore my feedback, partly because it is based on a profoundly different view of the company’s primary purpose: I believe its fundamental task is to get me to work on time and cheaply; the company is focused on generating profit for its shareholders. Also, the company is able to ignore my feedback because of the imbalance of power in our relationship: The only way I could choose to use a different train company would be if I moved to another region of England.

It is all too easy for autism researchers to slip into the position of the train company — of operating in a ‘pretend feedback’ mode, in which consultation is sought but ignored. This is a particular risk when the people giving and receiving the feedback have substantially different interests and perspectives, and when the balance of power is uneven.

For example, what does an eminent, well-funded researcher studying early intervention for autism do when told by an autistic person that she should not be trying to cure autism? And how should a funding council react when parents tell it they are not interested in genetics, but only in practical research geared toward helping their autistic children sleep better?

Agree to disagree:

Some researchers may be tempted to ignore challenging voices in the autism community — to nod and smile politely while not actually engaging. After all, it can be hard to know what to do with feedback you disagree with or do not fully understand. And it is especially difficult to assimilate ideas that you know have value, but may call for a major rethink of your work.

Occupying an echo chamber of opinions that support your preconceptions is far more comfortable than considering contradictory views.

In an influential statement on building an ethically informed approach to autism research, Liz Pellicano and Marc Stears suggest a way for researchers to avoid token dialogues with the autism community: Cherish disagreements1. They point out that within any group of stakeholders in autism research there will be different opinions — often profoundly different.

For example, even among autistic adults there are passionate disagreements about whether it is right for scientists to seek a cure for autism. Some welcome the idea, hoping such treatment would improve their lives. But others are vehemently opposed, arguing that the hunt for an autism cure is driven by a prejudiced and derogatory view of autistic people as inherently disordered.

Any conversation that seeks easy consensus will be superficial and insincere, failing to engage with important differences in perspective. Instead, what is required is respectful and open exploration of disagreement.

In my experience, welcoming disagreement is not easy. I find it uncomfortable to overtly challenge autistic people’s views on autism, as I worry that I am being disrespectful. But if we can create situations in which there is parity between researchers and members of the autism community, we can open the door to more robust and honest exchanges.

Only then can we decide what research to do and how to do it based on a real understanding of the needs and perspectives of everyone with a stake in the work. And the benefits of such an understanding are something we can surely agree on.

William Mandy is senior lecturer in clinical psychology at University College London.


References:
  1. Pellicano E. and M. Stears Autism Res4, 271-282 (2011) PubMed
  • Rene Anand

    I agree one must respect such differences in those who are affect by autism and make all the necessary advocated changes in the work place to help them. However, I feel that trying to identify the causes of autism, including susceptibilities to environmental factors such as lead poisoning or nutritional deficiencies such as zinc or manganese in early brain development are helpful for the future. These studies can protect the developing infant and prevent severe brain damage. The baby teeth analysis from Sweden is a good example. “Autism and Heavy Metals Linked through Baby Teeth” . https://www.genengnews.com/gen-news-highlights/autism-and-heavy-metals-linked-through-baby-teeth/81254445. Our own studies are synergistic with such clinical studies and offer early advisory information to caregivers and families of those affected by autism that can at least greatly reduce severity when used in the clinic after they are validated by larger studies. Its a message of hope that excellent science can also make a difference too.

  • Gene Bensinger

    Well said. Soliciting a wide range of input is essential. Disagreement on the direction and choice of research is inevitable from time to time. But beware ideological or political litmus tests championed by one constituency or another. A wide range of ethically guided paths must be pursued to understand the universe of autism spectrum disorders and their co-morbid conditions, even if some in our broad community stand in opposition.

  • Katie Wright

    Excellent points.

    One of the hardest things for some in the ASD community to accept is that we may have radically different opinions about something, yet no one is wrong. Those who embrace their ASD aren’t wrong yet neither are the parents of severe ASD people who experience autism very negatively. Better to accept we do not have the answers for other people’s autism.

    NIH & CDC exhibit terrible tokenism. Stakeholder input is meaningless. ASD research reflects interests & priorities of academics alone. I so rarely see a federally funded research that studies my son’s (very common) issues or research could assist him in any way. IACC is highly unrepresentative of ASD families but the NIH basically ignores IACC recommendations anyway.

    It’s really tragic how little progress has been made. It’s no wonder that no disorder or disease community is more frustrated with the NIH than the ASD constituency.

  • MaryTormey

    The researchers who abused me should be prosecuted! I was raped with needles and subjected to sensory abuse to defraud medicaid, it was never about helping me, just getting me on as many harmful drugs as possible. They didn’t even have food suitable for someone with my allergies, or a suitable place for me to sleep. At home I get hugs, safe food and I have people to talk to, a place where I can soak to make up for my soap allergy and people who want to have me around, I was at the hospital, only to suffer alone in pain, so they could leach money out of medicaid for care they did not provide…

  • Sharwan Kumar

    A cure, a rapid cure for their child with autism is very much desirable by the parents. In fact, the first thing they look at is a cure or treatment coming out of every research that becomes public. That is not unnatural. However, things are not easy. Serendipity can not be expected in research, particularly in the field of autism spectrum disorder. Researchers have to move into their research topic in a modern scientific manner. Of course, I do believe that if the researchers happen to be the parents of such children, they will be more dedicated to their research as only the wearer knows where the shoe pinches. Things always take their time. At the same time, I also wish to say the results could be awaited quicker if lot of money is spent on this research. The money that is being spent on the so called space research world wide ought to be spent on research on autism. Let us be hopeful that the situations will improve soon.

    • Kal

      Without autistic people you wouldn’t have space research. But I guess that’s your aim anyways so what a win for you.

  • Erich Kofmel

    This is a tired argument, I feel, but there are gay people who hate being gay. Does that mean researchers are permitted to search for a cure for homosexuality? Should there really be an open dialogue on whether gay conversation camps are “good”, because some who are gay (but don’t want to be part of the LGBT community) do not object to gay conversion, when most of us do? Does that mean that countries such as Russia are right in prohibiting gay “propaganda” and others such as Iran in killing gay people. Same for autism. The problem isn’t autism, it is the negative societal attitude toward autistic people. All the stigma and prejudice and talk of us as a burden. People avoiding us. Change that, not us. Otherwise you will soon be in a situation where pressure will be exercised by non-autistic people on us to get the cure or face financial hardship (i.e. no aids, no disability benefits [with disability being the consequence of social exclusion, not an impairment], and so on). And no, we don’t need self-interested non-autistic researchers to “facilitate” a dialogue between us. Qui bono?

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