David Celiberti, PhD, BCBA-D, Carolyn J. Sniezyk, MS, BCBA, and Erin Leif, PhD, BCBA-D
Association for Science in Autism Treatment

Information about autism treatment conveyed in the media influences and impacts both parents and professionals alike. According to the Ethical Journalism Network, there are scores of codes and statements to guide journalists in their important work of sharing information with the public. The largest available resource providing international codes of ethics by geographical region can be found here.

The Ethical Journalism Network has identified five common themes. In this short piece, we would like to showcase these five core principles and discuss how they intersect with media representations of autism treatment. As we highlight below, the current landscape of the autism community is fraught with multiple threats and challenges to these core principles. Finally, in the spirit of promoting accuracy and transparency, we also offer some proactive strategies and considerations.

 

Core Principles of Journalism (Ethical Journalism Network. 2018)Threats to this core principle that impact the autism communityProactive steps for journalists to avoid conflicts with this principle
1. Truth and Accuracy

“Journalists cannot always guarantee ‘truth’ but getting the facts right is the cardinal principle of journalism. We should always strive for accuracy, give all the relevant facts we have, and ensure that they have been checked. When we cannot corroborate information, we should say so.”

  • There are many false claims regarding autism treatments, their relevance, and their relative efficacies.
  • Treatment proponents may exaggerate the existing research basis for a particular treatment.
  • Many consumers may erroneously attribute gains to a particular intervention even if the individual with autism is receiving multiple treatments.
  • Interpretation of varying levels of scientific evidence can be challenging.
  • Evaluate the value of various sources of information (peer review, surveys, anecdotal reports, testimonies, etc.).
  • Check the accuracy of information before reporting.
  • Know what sources are available to investigate the accuracy of information (e.g., ASAT, National Standards Project, Raising Children’s Network, National Professional Development Center on Autism Spectrum Disorder, American Academy of Pediatrics).
  • Contact other sources aside from the person/organization making the claim or an unbiased expert in the field.
  • Build connections with experienced and reputable professionals in various fields so that you can solicit advice/information from them when determining the truth or accuracy of information.
  • Acknowledge when the truth of a claim was not verified in cases when warranted, or if no research exists to support the claim.
2. Independence
“Journalists must be independent voices; we should not act, formally or informally, on behalf of special interests whether political, corporate or cultural. We should declare to our editors – or the audience – any of our political affiliations, financial arrangements or other personal information that might constitute a conflict of interest.”
  • Autism treatment is a multi-billion-dollar business, and financial motivation may be in play but may also be veiled.
  • Businesses/organizations in the autism industry may sponsor events or other public relations announcements with the goal of advertising their products/services.
  • Both providers and consumers may be strongly motivated to obtain publicity that may bolster their efforts to garner funding or insurance reimbursement.
  • Avoid verbiage that indicates particular services may be effective if there is no evidence to support such a claim and perhaps even reconsider whether the story is worthy of publication.
  • Consider ulterior motives when writing your article.
  • Inquire about and share details related to potential conflicts of interest (including possible connections to the individuals involved in your story).
  • Distinguish between opinion and scientific evidence when reporting. Clearly identify when the subject of the story is engaging in advocacy or commentary so the public can distinguish these from the impartial reporting of facts.
3. Fairness and Impartiality

“Most stories have at least two sides. While there is no obligation to present every side in every piece, stories should be balanced and add context. Objectivity is not always possible and may not always be desirable (in the face for example of brutality or inhumanity), but impartial reporting builds trust and confidence.”

  • New fad treatments for autism surface on a continual basis. Presenting information regarding fad treatments that suggests they are effective or can cure autism is a real risk and can serve as a tremendous source of distraction for parents and professionals alike.
  • There are currently over 500 distinct marketed treatments for autism, the vast majority of which lack any scientific support. If you were to write a story every week on a particular autism treatment based on someone’s “opinion,” then you would be writing a story every week for almost ten years.
  • Attempt to contact a few reputable sources on the topic and build a reputation for being a trusted source of information.
  • Be sure to clearly state limitations (if no adequate research has been conducted, if information is solely testimonial in nature, etc.)
  • Consider a very relevant quote by the late New York Senator, Daniel Patrick Moynihan, who stated, “You are entitled to your own opinions but not your own facts.” Published research and objective data should move your story away from competing opinions toward an objective assessment of the evidence.
4. Humanity

“Journalists should do no harm. What we publish or broadcast may be hurtful, but we should be aware of the impact of our words and images on the lives of others.”

  • Presenting information about fad therapies in a way that suggests they are effective misleads families and can lead to them wasting precious resources (years of time, thousands of dollars) on treatments that will not lead to better outcomes for their loved ones.
  • News stories can divert attention from effective therapies and may confuse consumers, lead them to second guess their current approach, and potentially derail existing efforts. This may slow down or halt their progress.
  • Presenting misinformation about the causes of autism can also lead people to put their loved ones and the community at risk (such as by not vaccinating their children).
  • Think about the potential impact of sharing messages (e.g., a parent whose child is receiving intensive early intervention reads in your article that that practice is “abusive” when it is not).
  • Show compassion for those who may be impacted by news coverage and use heightened sensitivity when reporting on issues that impact vulnerable populations.
  • Consider a relevant quote by Dr. Patrick Plaisance when discussing the dilemma between empathy and the news: “The emotional power of [journalism] lies in the data, in the ability to show, not merely tell.” Look for ways to supplement your stories about people’s lived experiences with data supporting the therapy. Alternatively, signal to the reader when a person is describing their lived experience with a therapy, but that no data currently exist to support the therapy.
5. Accountability
“A sure sign of professionalism and responsible journalism is the ability to hold ourselves accountable. When we commit errors, we must correct them, and our expressions of regret must be sincere not cynical. We listen to the concerns of our audience. We may not change what readers write or say but we will always provide remedies when we are unfair.”
  • It is difficult to admit errors and call attention to mistakes. However, failure to do so creates a condition where more harm is done by perpetuating the spread of misinformation.
  • It is possible that a person may fail to draw attention to his or her mistakes because they fear that the audience will lose trust in their reporting. However, failure to notify the public of errors deprives the public of the opportunity to make informed decisions based on accurate information.
  • Take responsibility for accountability by checking the accuracy of work before publishing by verifying information and using original sources.
  • Provide sources and citations for material.
  • In the event that information was reported and later discovered to be inaccurate, share this new information. Disclose what was said and why it was inaccurate. Publish retractions when necessary.
  • Examine the way your own values and experiences may impact your reporting.

The following sources provide more information about ethics for journalists: IFJ Global Charter of Ethics for Journalists (International), Accountable Journalism (International), Society of Professional Journalists (USA), European Federation of Journalists (Europe), MEAA Journalist Code of Ethics (Australia).  We hope these ethical guidelines, along with the proactive strategies described above, serve as a useful source of guidance for journalists who are looking to write the next story on autism.

Citation for this article:

Celiberti, D., Sniezyk, C., & Leif, E. (2020). Five principles of ethical journalism: Implications for media representations of autism treatment. Science in Autism Treatment, 18(2).

Other ASAT articles that may be of interest:

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