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Autism researchers need to actively connect with public

by  /  7 July 2015

Peter Reynolds/Illustration Source

Miscommunication pervades the history of autism research. Overhyped studies have left families clamoring for experimental treatments such as bone marrow transplants — and the vaccine debate rages on.

This distortion of science is frustrating for many autism researchers, most of whom are careful advocates for their work. But are they doing enough to communicate their findings — and explain their findings’ importance — to families affected by autism?

The answer, suggests a study published 26 May in Autism, is no.

The researchers polled 60 scientists (all of whom receive funding from the Simons Foundation,’s parent organization) about the importance of communicating with the public. All but one of them thought their research would be of interest to parents of children with autism, yet fewer than half thought it is “very important” to connect with parents directly or for parents to understand scientific research.

This perspective is problematic, to say the least. For one thing, it perpetuates misinformation. The researchers also asked scientists and parents of children with autism what they think causes the disorder. Most of the scientists said they believe that genes are a primary cause of autism and none see vaccines as the culprit. But only 55 percent of parents share this view of the primacy of genes, and 13 percent believe vaccines are to blame.

No excuses:

Lack of communication also threatens researchers’ relationships with the community they’re trying to help.

As a graduate student studying treatments for autism at David Beversdorf’s lab at the University of Missouri in Columbia, I see the danger of failing to connect with families. I’ve heard families express frustration at never hearing the results of studies they participate in. When we don’t take care to disseminate our findings and put them into context, we leave the participants in our studies feeling unengaged, uninformed and undervalued.

What’s more, our research priorities may be woefully off-target. There’s some evidence that what we’re studying doesn’t match up with the concerns of the autism community. Self-advocate John Elder Robison made this clear in his passionate address at the 2015 International Meeting for Autism Research in Salt Lake City, Utah. He encouraged scientists to listen to people with autism and learn about their struggles, such as barriers to employment. “We need tangible, actionable help,” said Robison. “And we want it now.”

By partnering with the autism community, we can provide the help Robison and others seek. We need to involve participants in the research process from a study’s design to the dissemination of its results. Funding initiatives such as the Patient-Centered Outcomes Research Institute are providing incentives for this kind of partnership, but we need more programs that push community-scientist dialogue.

As scientists, we must also take steps to communicate with the public, even if these efforts cut into time spent in the lab or writing grants. Half of the scientists surveyed in the study said they lack opportunities to communicate with parents of children with autism, and about half said they don’t have the time. But this is important — and we need to make the time.

Researchers interested in making a difference can join Twitter, or begin a blog, like those by Sue Fletcher-Watson and Jon Brock, that explains science for a lay audience. They can visit clinics to meet people with autism and their family members. They can give talks at the public library or at the Science Café in their city. They can work with journalists to make sure the correct message gets out.

I have become a part-time science journalist while I finish my graduate studies. Covering research in a way that makes it accessible to the public is both challenging and humbling. It is also rewarding.

We need to realize that communicating with the community is not optional. When we treat engagement as an essential part of our job, we leave a mark that extends beyond scientific literature to people’s lives.

TAGS:   autism, community, funding
  • Katie Wright

    So many excellent points in this post. Researchers are not seeing the big picture nor are they aware of gaps in research. ASD families have had enough of learn the signs, early ID science. There are over 11,000 such studies but treatment research directed at helping those with metabolic problems, PANDAS, GI problems or regression are minimal. Too much basic science and too few successes.

    The vast majority of ASD families feel genetics is over funded while treatment and environmental science starved for resources. The honest and painful truth is that most projects have not delivered. ABA was developed almost 30 yrs ago! 1,000 more eye gazing studies will not help anyone. Only 1 in 14 ASD children meaningfully improve with early intervention. We have got to do more and view ASD as a whole body disease, at it is in many cases.

    Rather than develop yet another academic body why aren’t researchers attending ASD family science and education conferences? They are terrific ways to connect with families and sign people up for studies. The National Autism Assoc. conference, for example, covers the latest behavioral and medical treatment research plus environmental science. IMFAR is so inert in comparison and seems to be run by academics for academics while serving people with autism is an after thought.

    • Matt Carey

      Once again, Katie Wright speaks for the loud minority.

      “The vast majority of ASD families feel genetics is over funded…”

      The vast majority of autism parents surveyed saw genetics as the primary source of autism risk. Followed by “act of god” and well before vaccines.

      “Rather than develop yet another academic body why aren’t researchers attending ASD family science and education conferences”

      They have. And they were aghast at the lack of scholarship of the self-styled “researchers” and “clinicians” who prey on the autism parent community. People who promote bleach enemas, chemical castration, chelation, HBOT, “magnetic” clay baths and so much more.

      The real question is why more haven’t actually spoken out against the fake therapies promoted at these parent conventions. Why can anyone who blames vaccines offer any story they want as a sales pitch for all these fake therapies, and no one at the parent conventions will stand up for the children? The parents are being duped and the fake “researhers” at these conventions just remain quiet while each presents junk science after junk science talk.

      We need good research and effective treatments so that the abuse promoted at these parent conventions will stop. Charlatans thrive in a vacuum and, sadly, we have a vacuum.

      However, this is not an easy problem. Easy answers are easy to find but are rarely useful. Parent conventions are full of easy answers. We need to understand the actual biology of autism and that is a difficult task. Pretending like it is simple and that researchers are just missing the problem helps no one, least of all autism families. We need to insure that we invest in the long term in research. Understanding, real understand, is sadly a long term effort. But if we just chase all the supposed quick fix answers, we will never accomplish anything.

  • Ana Dultra

    Katie, is so right about her points. By the way children with autism are not being treated for their condition instead they spend their lifes in self contained classrooms being watched by not well trained aides.

    • Katie Wright

      Or worse in they are restrained for days….And a new trend for “treating” severe ASD is ECT.
      This is happening everyday at mainstream hospitals like Kennedy Krieger.

  • Eileen Nicole Simon

    Genetic disorders are the cause of autism in some cases. Restricting phenylalanine in the diet prevents brain damage in children born with PKU (phenylketonuria), because an abnormal enzyme produces toxic abnormal metabolites in PKU.

    Prenatal prenatal rubella infection , or prenatal exposure to valproic acid are also responsible for some cases of autism.

    Complications at birth have been documented more often than any other harmful factor associated with autism. But then low Apgar scores and respiratory distress are often blamed on some problem with the mother.

    The defining “traits” of autism are all neurological signs, signs of brain damage: (1) Language disorder, (2) repetitive movements, and (3) diminished level of (social) consciousness.

    Sites of damage may have been revealed by research on asphyxia at birth, and measurement of aerobic metabolism in the brain. In PubMed lookup the research of WF Windle (1959-1974), and research based on the deoxyglucose method of L Sokoloff (1981).

    Relay nuclei in the auditory pathway and the basal ganglia are the most vulnerable sites in the brain to metabolic disruption. In PubMed lookup the research of Lukose and Kulesza on auditory system abnormalities in autism, 15q duplication syndromes, and prenatal exposure to valproic acid.

    My autistic son in 52 years old. I have been reading the research literature for 50+ years, and went back to school for a PhD in biochemistry. Software systems engineering was the focus of my professional life, much of which is relevant to understanding brain circuits. I would very much like to discuss my ideas with professional autism researchers.

  • Matt Carey

    As a parent I need to see some progress towards making a better life for my kid. I need researchers who are focused on issues that directly impact quality of life. Researchers in these areas are listening and communicating–I’m thinking of people like David Mandell, Paul Shattuck, Connie Kasari, Helen Tager-Flusberg, and many more. These are just the few that came to mind quickly.

    We do need to have science and research results communicated and put in context. SFARI is probably the best place there is for that. And I greatly appreciate encouraging others to step forward.

    As you mention above, some researchers do speak in local venues. A few of the autism schools in the Bay Area host researchers speaking.

    While it is difficult to hear that we have a long road ahead of us, reality is better than fiction. We do have a long road ahead of us and basic research is the way to build the foundation that will provide advances, even if they aren’t immediate.

    We could use more researchers speaking out against the charlatans that prey on our community. It is amazing what can be pitched at the autism parent conventions. An example is the use of chlorine dioxide–a bleach–as a drink and as an enema solution. I have to give kudos to ARI for stepping up and putting out a statement against this. Chlorine Dioxide (aka “miracle mineral solution”) really does cross the border into abuse in many cases. Parents believe they are doing good, believe the charlatans, but the results–which include passing of the intestinal lining (these linings are labeled “worms” by the charlatans)–are harmful.

    We are not an easy community to engage. There is a level of hatred and attack that is heaped upon those who speak out. I recall reaching out to researchers when I first started this journey and finding some who just refused to engage. I later found that they had been burned before. They had spoken out, seen the backlash from parents and pulled back. Engagement with the autism community can be a minefield. I think it’s worth navigating that minefield, but it’s worth taking the time to be careful in how one engages.

    On the other side of the spectrum of engagement, I’ve seen a few groups who engage with clearly overblown press releases. With all due respect to the team involved, one example that comes readily to mind was the announcement of a stem cell trial for autism. First, the level of the press release makes me wonder how objective the team can be if the trial does not pan out. Second, I worry that this will drive more parents to take their kids to clinics in Panama, Ukraine and elsewhere that are selling “stem cell” therapies that are poorly thought out and, quite frankly, frightening.

  • ASD Dad

    Perhaps the greatest insight that science has given us about ASD is that there is indeed not one Autism and that it can be perceived, celebrated, cured or valued in all types of differing ways – that could be the beauty and strength of our shared community… a community of children, adults, carers, teachers, researchers and medical professionals. In truth it is the reflection of the broader community.

    Of course that does not come without controversy …

    Professor Paul Patterson, was a great man and will be sadly missed. He taught our community to respect the science by being a mentor and answering questions without prejudice. He showed for the first time the intricacies of the relationships between mother and child, infection, immunology, neurology, gut and behavior.

    A driver that goes beyond Autism and has particular relevance to what we call neurodevelopmental disorder and mental health issue – Autism, Anxiety, Depression, Bipolar and Schizophrenia …and now into Parkinson’s and Alzheimer’s.

    His work, most importantly, and others like it underpin that Autism is both genetic and environment. It remains so over the lifetime of the child as it progresses into adulthood and onto old age.

    These are new paradigms that are leading to ‘cures’ – or if that word is controversial – most importantly giving back quality of life to children and adults with ASD.

    The science also shows us how genetic expression through environment always has effect in both positive and negative ways – some of the new research is beginning to show the relationship between pollutants, heavy metals, chemicals and other factors in our man made environment.

    Crucially and underpinned by the recent Interagency Autism Coordinating Committee (IACC) meeting held under the auspices of the National Institute of Mental Health (NIMH) – IACC Workshop on Under-Recognized Co-Occurring Conditions in ASD. Autism is not defined by simple DSM diagnostic criteria. In particular groups of children there are co-occurring or convergent diseases and mental health disorders – epilepsy, seizures, gastrointestinal diseases, inflammatory bowel disease (IBD), diabetes,autoimmune diseases, metabolic diseases, sleep disorders, anxiety, depression … autism is a whole body/mind construct and needs to be addressed by multidisciplined teams that go outside of a narrow medicine framework to encompass education, psychological, sociological and community support.

    In the end there is a simple message – we are a community whatever our views – our strengths can be engagement and inclusion. We all want the best for our children and ourselves that should be the common factor that drives our care, humanity, ethics and morality.

  • ASD Dad

    Some useful links

    IACC Meetings – Video / Speaker Notes /Powerpoint Slides etc

    Paul Patterson – Infectious Behavior: Brain-Immune Connections in Autism, Schizophrenia, and Depression

    Available at MIT as a book or E-version

    SFARI Links of note

    Simply place Paul Patterson in the search window at top.

    • Ethyl

      Thanks. Between you and Matt Carey, that name has come up a lot. I will have to look into it.

      • Ethyl

        OOps, that was Shattuck. I have Patterson’s book somewhere. I will have to look into Shattuck now, too.

  • Ethyl

    One day, we are going to wake up and realize kids with neurological differences are more likely to have severe reactions to vaccines. A severe reaction is a wake up call to look into Epilepsy or other neurological diseases. (Mitochondrial Dysfunction, Tuberous Sclerosis…Dravet Syndrome kids have a 1 in 4 chance of having a febrile seizure in reaction to vaccines. Normally, a child has a .5 to 6 out of 100,000 chance of having the same reaction according to the World Health Organization.)

    I do believe medicine has done parents a great disservice by refusing to recognize that. To push the “! in one million” reactions to vaccines has set back Autism research for a generation. Here is a clue as big as your head, and they refuse to see it less the sacrosanct (vaccines) be exposed as less than perfect. But the thing is, they (vaccines) are closer to perfect than any other medical intervention to disease. It’s just that a select group of imperfect children (in that they are predisposed to vaccine reaction) are being totally brushed aside. That’s not science. That bothers me a LOT.

  • lifebiomedguru

    Dr. Offit did not pay attention to the published science on aluminum neurotoxicity AT ALL in writing his book, so here is a reading list for him. If you have an autistic child and you accept the CDC myth that vaccines do not cause autism, you are not likely helping their quality of life.


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