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Opinion / Viewpoint

Communication lapses hinder autism research

by  /  24 October 2014

The term ‘deficit model’ has traditionally meant treating people with autism by focusing on their limitations rather than their strengths. But I would like to introduce – and ultimately abolish – the deficit model in a different context: science communication.

Communication is critical in helping the public to understand advances in autism research. If we can’t explain the importance of our research, we won’t secure funding or public support. In fact, some granting agencies and tenure committees now require public outreach activities.

Thanks to social media, engaging the public is easier than ever. But most of us are using a deficit model to structure these interactions. We believe that if people are skeptical about a certain finding, they must lack information. Correcting this information deficit will help them understand and act accordingly.

Scientific evidence suggests this approach is unrealistic.

Anyone who has had to address the issue of autism and vaccines can vouch for the fact that simply relaying information is not enough to change someone’s behavior. The field of autism is not unique in this sense. A 2011 study found that informing people about the dangers of climate change actually lowered their perception of the risk1. Similarly, providing a scientific explanation of synthetic biology doubled the proportion of people who perceived more risks than benefits, a 2009 study found.

We have to accept that public opinion is not based on information alone. Rather, it incorporates a person’s trust for the information source and their pre-existing beliefs. This is important because it affects the types of research projects that get funded, as well as the types of treatment programs and research studies that families are willing to participate in.

John Elder Robison provided an important example in his eloquent address at the 2014 International Meeting for Autism Research. “There’s the continuing reality that lay people in the community believe that scientists want to do genetic research to eradicate autistic people,” said Robison, who has Asperger syndrome. “That may be the farthest thing from a researcher’s mind, but the fact that the public believes it is a disaster for researchers.”

It is a powerful reminder, now that I am establishing an autism genetics research program at the Marcus Autism Center in Atlanta, Georgia. We must collaborate with our study participants and design studies together. For example, current genetics studies differ widely in their plans to return results to participants. When we think about fostering trust, this is an obvious starting point.

How we communicate is also important when we try to engage caregivers in treatment plans — particularly ones that take a long time to pay off. A new study by my colleague Nathan Call and his team found that parents might place less value on these ‘delayed outcomes’ than researchers do2. In other words, simply informing them of the benefits of a behavioral intervention is not enough to keep them in the treatment program long-term.

Studies like Call’s can help us develop best practices for communicating our findings. As a field, we can develop tools to assess a caregiver’s engagement in a treatment program upfront, and emphasize smaller successes along the way during a longer intervention.

By changing the way we engage the community in our work, we can advance our understanding of autism together. It’s time to reduce the communication deficit.

Chris Gunter is associate professor of pediatrics at Emory University School of Medicine in Atlanta.

References:

1. Kahan D. et al. Nature. Clim. Change 2, 732-735 (2012) Abstract

2. Call N.A. et al. J. Autism Dev. Disord. Epub ahead of print (2014) PubMed


  • ASD Dad

    In the last three years of research in understanding the interactions of environment, genes and autism we have come far closer to giving ASD children, adults and parents one simple element …

    Choice

    There are differing opinions on what it means to be Autistic and live as an Autistic child or adult. Each and everyone relies on that significant word …

    Choice

    Making choices is implicit in giving dignity and humanity to Autism. Taking away choice or dismissing the decision making of children, adults and parents removes it … There’s nothing complex or profound in this, but it is a failure of many commentators to recognize the diversity and opinions of our community.

    This article dismisses choice, to it’s own detriment, because of a narrow focus on genetics, when there are clearly other significant environmental factors that will in the near future, prevent Autism, ameliorate or cure co-morbid conditions associated with Autism (epilepsy , depression, anxiety and a host of other physical diseases)and in some areas such as treatments focused on the GI tract/microbiome, for instance, essentially “cure” Autism in some individuals.

    You don’t have to make that choice of being “prevented” “ameliorated” “cured” but at least it should be communicated, so that others might.

  • usethebrainsgodgiveyou

    I know of a very progressive and science oriented woman who was astounded by the degree of disrespect in the wording towards children like her son, who has autism, at the Imfar 2014 meeting. I’m not kidding when I say perhaps scientists need to undergo a type of “sensitivity training” that is so rampant in the workplace today. We are talking about the most profound relationship most of us will ever have, between ourselves and our children.

  • RA Jensen

    Michael Rutter several years ago predicted the extinction of behavioral geneticists. Behavioral geneticists, Rutter said, consider the environment as a nuisance to be ignored. Behavioral geneticists point to twin study heritability estimates. A conclusion about heritability estimates is dependent on the bias of the interpreter. In the only population based study of leprosy, the authors calculated a heritability estimate of 57% to leprosy similar to many autism twin studies including the Hallmayer et al twin study (58%) and the 1995 Rutter twin study (60%). The recurrence risk for siblings under 21 was 6.4%, similar to the autism recurrence risk (6.9%) seen in Scandinavian sibling recurrence risk, the only population based sib recurrence risk study. The only cause of leprosy is exposure to mycobacterium leprae regardless of any genetically influenced risk.
    http://www.biomedcentral.com/1471-2350/6/40
    http://www.ncbi.nlm.nih.gov/pubmed/21727249
    http://www.ncbi.nlm.nih.gov/pubmed/7792363

  • Right On

    The comment regarding sensitivity training is right on. Do those Scientists not realize there is no “they, and us”. People need to accept the fact that people on the spectrum are everywhere.

  • Elizabeth Marling

    I am personally very confused by the reaction most people have to anything related to genetics. Modern day medicine is utilizing genetics to help save lives and improve treatment. It isn’t about some dystopian world where everyone is forced to do x, y, and z or their doctor won’t see them anymore. Even the responses here seem kind of adolescent almost, pardon my impoliteness, but it needs to be said.

    Modern medicine is looking to genetics for knowledge. Knowledge is not the enemy. Let’s say you were born with a tiny bomb in your heart that would go off in exactly 62 years, 3 months, 2 days, 8 hours, 10 minutes and 24 seconds. Would you want to know it was there? Would you want your doctor to want to get that thing out of there if possible and try to deactivate it if not? I certainly would. This is an apt metaphor for what doctors want to utilize genetic information for; there is no desire to stigmatize by 99% of the medical community. The common belief is that knowing is better than not knowing, even if the news is not good. If you know, the worst case scenario is that nothing changes. You get a chance, though, and that is what is important. The focus should be on the chance to disable that bomb and what a gift it truly is in modern medicine.

    I have personally had genetic screenings for a strong history of terminal breast cancer on my mother’s side of the family going back generations. It starts at age 40 and no one has lived past 60 including my own Mom. It was frightening to take the tests. I was scared. I had to face the chance that I could have every marker and my life would change immediately from that day forward. Choice is important, and I assessed mine. On one hand, if I did have the markers and did not know, I would not have to be accountable. I wouldn’t have to get screened and tested and checked for cancer multiple times a year for life. I could take hormones and eat junk food and drink and do all kinds of things that would just set those genes in motion and simply claim ignorance.

    Ignorance is not bliss. I chose to be tested because I realized that I would save myself from living in fear. Knowledge is one of the best cures for basic fear I have found in my life. Things are never as scary as they seem when you face them. I hope that people can see researchers and doctors not as mad scientists but as purveyors of knowledge.

    Thank you for this article. I enjoy your website and I felt it was appropriate to comment, given the subject matter posted here. As I stated before, I am not sure why people feel so upset by the concept of genetic testing. It seems like many lay people–too many–have internalized some assumption that the information would inevitably be used not to help them but to exploit them or threaten their identity in some way. I am very interested in ways to overcome this curious belief. It seems to be connected to a distrust of authority that is “factual” and thus can’t be easily argued with if offensive, perhaps? Very interesting stuff.

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