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Pep Boatella
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Autism’s history holds lessons for today’s researchers

by  /  14 March 2016

The past six months saw the release of two bestselling books about autism: Steve Silberman’s “Neurotribes,” and John Donvan and Caren Zucker’s “In a Different Key.”

Both books chronicle the oftentimes dark history of autism while expressing hope for a better future for people with the condition. They focus on the good work of people — strong-willed parents and devoted advocates — who transformed a once-shameful diagnosis into a widely accepted condition. But they also highlight several missteps by scientists that derailed research and the lives of many people on the spectrum.

This history offers lessons for today’s scientists, ranging from the importance of purging presumptions about autism to the acute need for services that help people, especially adults, with the condition.

The books take the reader back to the infancy of autism research. In the late 1940s, psychiatrists declared that they had found autism’s cause: cold parents — particularly mothers — who did not love their children enough. Leo Kanner, one of the first psychiatrists to study the condition, abandoned his own theory that autism was innate in favor of what would later be called the ‘refrigerator mother’ hypothesis.

“If Kanner had really stuck to his guns and gone with his instincts, it’s possible the whole refrigerator mother theory never would have evolved the way it did,” Donvan says.

Kanner later recanted the refrigerator mother theory, but for the next two decades, many psychiatrists focused on treating what they believed were defective mothers and fathers. Research exploring other explanations for the condition stagnated.

Having a scientific orthodoxy can be a positive thing, but it can cause severe damage if it turns out to be inaccurate, Donvan says. “The history of autism has shown that, time and time again — particularly in the early days — researchers failed to examine their own assumptions and biases.”

Biased beliefs:

Flawed assumptions also invade researchers’ attitudes toward people with autism, according to Silberman. He says scientists long viewed people with autism as less than human, rationalizing a range of ‘treatments’ that were more akin to torture than therapy, including electric shocks and physical abuse such as hitting. Although contemporary practitioners have largely abandoned these methods, some continue to use punishment as a means of modifying behavior, he says.

“The first question that should be asked in any research project is, ‘Would you do this to a non-autistic person?’” he says, noting that asking adults with autism for their input is a crucial second step. “Autistic people should be seen as valuable collaborators in your work, rather than as passive subjects.”

Many researchers working in the field today are motivated by a deep desire to help people with autism, Donvan says. But scientists should still ask themselves, “Is there anything I’m doing now that I may regret 20 years from now?”

Some of the researchers who tested electroshock therapy or hallucinogenic drugs in children with autism back in the 1950s and ’60s did so with the best of intentions, Donvan says. “In light of modern mores and best practices, those choices look bad today,” he says. “But that does not mean those researchers were motivated by cruelty or sadism.”

Research revamp:

The 1990s saw a sea change in awareness of autism. People previously diagnosed with childhood schizophrenia or minimal brain damage were recognized as having autism all along. This new awareness sparked the notion of an ‘autism epidemic,’ which drew an influx of research dollars into a once underfunded and overlooked field. But unfortunately, little of this money went toward helping people with autism.

It went largely to uncovering autism’s cause, giving scientists insight into the workings of the brain. It also generated leads for drug targets. But for people with autism and their families, “the tangible benefits remain elusive,” Silberman says.

Researchers know “astonishingly little” about the lives of adults with autism, he adds, including how many of them there are, how other conditions associated with autism affect their lives and how best to translate their abilities into meaningful employment. Likewise, little research focuses on how autism manifests itself in women, or on determining the prevalence of autism in minority communities with limited access to diagnostic services.

There is also little research into better drugs for controlling seizures — one of the leading causes of death among people with autism.

“These are not questions that can be answered by sequencing another set of genomes of people from multiplex families,” Silberman says. “That kind of work is still very much worth doing, but if we’re only doing that kind of long-range research, we’re not really meeting our responsibility as a society to help the autistic people who are all around us lead happier, healthier, more fulfilling and more secure lives.”

Intervention caution:

For those who are investigating treatments and services for people with autism, Zucker and Donvan warn that the work carries great responsibility. Parents are desperate for guidance about how to help their children, they say — especially in light of the emphasis put on early intervention. As past examples ranging from vitamins to hugging therapy have shown, families will rush to adopt new methods that are prematurely presented as solutions.

“Researchers need to be very, very careful in how they present their findings, so as not to set off hope for a quick, silver-bullet-type solution,” says Donvan.

How researchers talk to the press can shape the public reaction to research. In 1987, for example, The New York Times reported on the work of Ivar Lovaas, a clinical psychologist and pioneer in applied behavior analysis. The story, titled “Researcher Reports Progress Against Autism,” described children who were “transformed” into “apparently normal children.”

Although Lovaas never used the word ‘cure’ when talking to the Times, the story implied as much. The fact that his research was preliminary was largely overlooked. Parents frantically flew their children to his lab at the University of California, Los Angeles, even as he hopelessly tried to correct the false headlines.

Today’s scientists should take great care when describing their work and strive to communicate their findings in terms non-experts can understand, Donvan says. “Researchers need to understand that there’s a public that is hanging on their every word.”

Editor’s note: This story has been modified to acknowledge the fact that Kanner eventually recanted the refrigerator mother theory.


8 responses to “Autism’s history holds lessons for today’s researchers”

  1. Seth Bittker says:

    With respect to the “research revamp” advocated above, I am sure there are people who are very interested in chronicling the lives of adults with autism, counting how many there are, employment opportunities, and research on women and minorities with autism.

    For me with a family member affected these are not areas of research that I would like to see more attention on. Instead, it seems to me research on metabolomics, autism biochemistry, and relatedly therapeutics based on autism biochemistry hold greater promise. I wish the “research revamp” mentioned would lead to greater focus on these areas – not less.

    • Fox says:

      The research into biochemistry and so on is biased towards cures. I don’t want a cure. I want to be accepted for who I am. That’s not going to happen when hate groups like Autism $peaks are demanding more research into biochemistry and causes.

      • Seth Bittker says:

        Fox,
        If you look at the biochemistry that typically characterizes autism, it includes sulfation deficits, methylation deficits, high oxidative stress, and sometimes autoimmunity and dysbiosis. These are not healthy and it is reasonable to look at how this dysfunction could be ameliorated.
        While I don’t think a cure is realistic, therapeutics targeted to this biochemistry have a possibility of improving quality and longevity of the lives of those affected. To be clear, you should decide whether you use any therapeutics developed, but in my case I want options for my son and my family.
        With respect to Autism Speaks, it is a worthy organization. Unfortunately they are funding less biochemistry research and therapeutics research these days relative to what they have done in the past because genetics research which I think will be less efficient in developing therapeutics seems to be crowding out other types of research.

  2. Nathan Driskell says:

    For more research to be conducted, more people are going to have to be willing for themselves or their children to be part of future studies. In addition, holistic approaches should be looked into to determine not just what causes Autism, but what influences it.

    The problem today is distrust many parents have towards the medical establishment. This same establishment is where most of new research will be generated. We need to start working together to help determine the causes of Autism, which are most likely many.

    • Roseann Connolly says:

      Autism Hounslow recently had a researcher Laura Hall from UCL give a talk on Camouflaging: women on the autism spectrum which attracted an audience of about 20 made up of – autistics, carers, and professionals. The discussion that followed was interesting to all concerned. It raised the issue of autistic mothers and their concern that they had passed on the gene and their concern about their parenting skills.
      The talk was excellent and an opportunity for Laura Hall to invite and encourage people to take her survey and contribute to the research details at the bottom.

      There needs to be research in order to learn and have reliable information and data about autism – both bio-medical and holistic. Talking about research and involving autistics and carers – families and friends in the debate is healthy. Life is for living and self-acceptance of where you are in life regardless of your neurology – life circumstances etc an holistic acceptance of yourself – is the first step in enjoying your life and having hope in your personal future.

      Talking about research and talking about yourself can relieve isolation because you can connect with others in similar situations and compare and contrast how you feel and how you respond to life’s challenges in a mutually respectful and beneficial well.

      (Social Coping Behaviour – Survey with the University of Cambridge and University College London

      Would you like to contribute to the scientific understanding of social coping behaviour (sometimes called ‘camouflaging’) in adults with autism spectrum conditions (ASC)?

      Have you been diagnosed with an ASC, including Autism, Asperger Syndrome, Pervasive Developmental Disorder, or Autism Spectrum Disorder? Are you aged 16 or over?

      We invite you to take part in an online survey looking at the experience of coping during social situations. It will take approximately 1 – 1.5 hours.

      To take part in this survey,
      https://qtrial2014az1.az1.qualtrics.com/jfe/form/SV_7QD1HM2nqCZwQ5L

      For more information, and/or if you have any questions or concerns, please contact Laura Hull at laura.hull.14@ucl.ac.uk or call 020 7679 5394.)

    • chromesthesia says:

      Who cares about causes? There have always been autistic people. Obsessing over causes is a waste of time. What autistic people need is support, respect as human beings. Jobs, money. Housing! How about focusing on things like that?
      It’s not vaccines because unvaccinated kids get autism. Being a girl doesn’t mean you don’t get it. It means you’re under diagnosed. It’s not pollution or mercury. Autistic people JUST EXIST and will always exist! So let’s approach things in a more useful way, eh?

  3. Margaret OR says:

    Totally agree. Social services are great but we desperately need biomedical research to help the massively under served autistic people suffering ASD people with epilepsy, mitochondrial dysfunction, immune disease, etc

  4. In A Different Key says:

    As two of the authors quoted, we feel compelled to correct the impression this article might create that Leo Kanner’s primary place in the story of autism is as an evangelist for the theory that the coldness of mothers caused autism. This is far from the truth. As our book makes clear, we see Kanner as a groundbreaking thinker, a clinician beloved by parents, and a defender of mothers both in his lectures to students and in his copious writing for the lay public. He was a scientist who struggled honestly during his career to understand the exact nature and cause of autism — two questions that are unanswered even today. Never a dogmatist, Kanner weighed different possibilities for some years. His initial insight was to see autism as innate from birth. For a time, early in his study of the condition, he also placed considerable emphasis on the possibility that parental influences might be at least partly responsible for some children’s autistic behaviors — to the point where he appeared to be blaming parents (an interpretation of his intent that we recognize is disputed by colleagues who knew him personally.) Importantly, however, even during this shift in emphasis, Kanner never gave up on his original hunch that autism is innate. This was true even as he employed a metaphor for the home environment – “emotional refrigerator” – that he came to regret, for how it was interpreted (misinterpreted, he and colleagues insist) into the so-called “Refrigerator Mother” theory of autism. As this idea became popularized through the mainstream press, and by some practitioners, Kanner became one of the most respected voices to argue against it – and against the most vociferous of the mother-blamers, Bruno Bettelheim. (John Donvan and Caren Zucker)

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