There has been a dangerous misinterpretation of an autism study. This is an article that was supposed to run back in February but the company dropped the ball or chickened out. We suspect the latter possibility. Since the information is still very valid we’ll share it here with you.
By Andrew Areffi, Melissa Areffi, and Richard Foss
The media has suffered another Manti Te’o fact checking moment, but this time it’s in the medical world – specifically, the field of diagnosing children with autism.
The Wall Street Journal, Time Magazine, The Huffington Post, CBS News and other media outlets have released stories that greatly mischaracterize an important autism study, and it could have damaging repercussions for children and families dealing with this disability for years to come.
A recent study, Optimal Outcome in Individuals with a History of Autism published in the Journal of Child Psychology and Psychiatry, raised the possibility that some children on the autism spectrum may eventually, “lose all symptoms of Autism Spectrum Disorder and function socially within the normal range.” The study did confirm that some of the children, all of whom had received treatment, were able to function normally, but the media coverage was phrased so that readers would believe that children could recover or outgrow autism by the simple passage of time. Crucially, the reports did not address whether the “early intervention” treatment that all 34 “optimal outcome” children received was responsible for that positive result. The study compared 44 children with high functioning autism and 34 kids who achieved Optimal Outcome (34 typical development children also participated for a total of 112 participants). Further examination of the data by Dr. Fein and future studies will be required to determine what percentage of children may achieve optimal outcome and what treatments are most likely to contribute to that end, a fact that was obscured in a majority of reports.
There is an overwhelming consensus among therapists and doctors that early detection and treatment results in greater success over the long term. This leads to a feeling of urgency that motivates parents to seek early intervention even before a positive diagnosis of autism is confirmed. There is concern among many who have read the reports of this study than an imperfect sense of its conclusions may replace that urgency with a procrastinating “just wait and see” mentality among parents. Not least among those who are worried is Dr. Deborah Fein, the lead researcher on the paper. The study itself emphasizes that, only a “minority” of kids will achieve optimal outcome. Dr. Fein acknowledged that “ALL of [the optimal outcome] children had early intervention and most of them got behavioral intervention.”
The media reports on this study not only minimized the fact that less than half of the children achieved what was referred to as optimal outcome, but ignored the contribution of the therapy the children received. All of these publications saw the sensational and easy headline that said, in as many words, “you don’t have to worry, they’ll grow out of it”. The “it’s just a phase” mentality in parents is the biggest obstacle that prevents children from receiving early intervention. The media’s mischaracterization of this study will not only reinforce this obstacle but encourage inaction even after parents have accepted the diagnosis of autism. The WSJ article tells parents that the optimal outcome kids, “years later were indistinguishable from peers.” So should parents give them a couple years to grow out of it? Dr. Fein doesn’t think so, “I don’t agree at all that children ‘grow out of autism’ and I think that is a very harmful message to give parents and doctors. When I see young children, especially when I diagnose them myself at an early age, I urge parents to get the highest quality and most intensive intervention going as soon as possible.” All of the leading experts in this field agree the earlier the better, and the longer you wait, the harder it will be for the children to make progress.
Perhaps the reporters didn’t really understand what early intervention is and how it might have helped the children in this study; their articles don’t make this clear. If they had taken the time to analyze the study, the details might have led them to an equally sensational headline, “Study shows kids with Early Intervention can outgrow autism.” Besides its sensational effect, this headline reinforces the need for early detection and aggressive intervention. Instead, these articles had headlines that left readers with the impression that if they simply do nothing, there’s a chance that a child could just grow out of their disability. Even parents who were diligent enough to read the articles in their entirety were not told that some type of early intervention was received by all of the children who achieved optimal outcome.
The sunny picture painted by all media reports so far failed to mention other conclusions of the study, the most important of which was that there is no guarantee of outcome even with intensive therapy. Each child is unique, including children who test as normal, those with autism (even the ones at the same cognitive or functional level) and even the “optimal outcome” children from this study. As any parent of multiple children knows, the techniques and language that are effective in teaching one child may bewilder another. This is true of both everyday teaching and of attempts to reach kids with autism whose mental processes we are just beginning to understand.
Conspicuously absent from all the articles reporting on this study are any direct quotes from Dr. Fein. It’s not clear why. Dr. Fein was easy to reach for this article and said she has made every attempt to respond to media requests. She replied to our email to confirm the conclusions of this story within days, and none of the articles reported any difficulty finding her contact information or mentioned that Dr. Fein failed to respond to questions. Of the sources listed, only Time Magazine managed a general quote about autism from Dr. Fein. None of them contain any direct comments about the study, what she thinks about its findings, and how parents and professionals should apply them to the teaching and socializing of children with autism.
Unfortunately, the damage has been done at a crucial time. This inaccurate and incomplete reporting has been released just when some states are pushing to mandate that insurance companies cover autism therapy. Opponents of that move may be expected to use the reports of the study – but not the language of the study itself – to fight new coverage. States that have passed the mandate may be pressed to delegate few of their already financially strained resources to enforce the law when opponents can point to the media’s assertion that they’ll grow out of it. Doctor Fein seems to be doing her best to correct the record, but since the news cycle has already moved on, her efforts may have little impact.
Is it really a serious problem if parents delay therapy for children diagnosed with autism? We’ll leave you with Dr. Fein’s answer to our final question, which was, “Does your study indicate that optimal outcome can be or would have been achieved without intervention?” She responded, “I can’t for sure say that no child would reach optimal outcome without intervention, just with maturation, but in 35 years of clinical practice, I’ve never seen it, and would never risk such a thing.”
Andrew and Melissa Martinez are the parents of three autistic children and the authors of “Navigating Autism – The Essential Guide For Parents By Parents.” Richard Foss is a Los Angeles- based journalist and author.