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Yevgenia Nayberg
Opinion / Viewpoint

To screen or not to screen: That is not the question

by  /  5 January 2016
The Expert:
Expert

Mayada Elsabbagh

Assistant Professor, McGill University

On the heels of an intense election in Canada and on the brink of another in the U.S., we’re becoming all too familiar with political polemics. Voters are forced to take sides, and even the most complex problems become reduced to two-sided arguments.

I can’t help but see a parallel situation in the recent debate about autism screening.

In August, the U.S. Preventive Services Task Force announced that there is insufficient evidence that the benefits of screening children with no obvious autism symptoms outweigh the risks. The statement is technically accurate and consistent with the conclusions of public health experts in the U.K. and the Netherlands. But it has been polarizing.

Public health experts, on the one hand, believe the goal of screening is to facilitate a diagnosis and expedite care. But they say there’s no strong evidence that screening every child for autism in a doctor’s office is accomplishing this goal.

For their part, autism experts acknowledge that such screening is fraught with implementation challenges. But they fear it’s the only way to gather the evidence public health experts need. They also worry that recommendations against universal screening will make it harder for families to access care.

In situations such as this, I wonder if science and advocacy are uncomfortable bedfellows. If we want our research to affect policy and practice, we make recommendations that generate or reform policy. But policy is rarely based on evidence alone. All too often, it succumbs to special interests and political pressures. This makes it tricky territory for scientists.

Proof versus policy:

New Zealand’s chief science advisor, Peter Gluckman, who has written extensively about the interface of science and policy, believes that science should not dictate policy. Rather, it should provide “an important base for a rational assessment of options weighed up against those other criteria that politicians and their supporting policy advisors should consider,” Gluckman wrote in a 2011 report for the Prime Minister’s Science Advisory Committee. I find his perspective comforting because it values the skills of scientists over their personal values and beliefs, which are no better than anyone else’s.

Identifying children with autism is a complex scientific and societal challenge, and we should ask ourselves two questions: Are we considering all relevant evidence? No. And is screening every child too simplistic a solution? Yes.

There is an urgent need for thoughtful deliberation among autism experts as to whether screening is the only or best approach in any context. Too often, instead of addressing this larger question, discussions about screening are reduced to a comparison of screening tools.

This overemphasis on autism-specific tools distracts from what we can learn from other fields, such as child development. It is against this older and larger evidence base that we can continually define what we know and don’t know about when and how autism emerges early in life.

I also think researchers have been overly cautious about integrating evidence from genetics and neurobiology into discussions about screening, either because these topics are too complicated for an audience of policymakers or because of societal fears surrounding prenatal testing. It’s a shame that biology, which can arguably reveal the most universal ‘truths’ about us as people, gets low priority among scientists when considering an important health and social challenge.

Perhaps the way forward, as Gluckman suggests, is for scientists to synthesize all the available evidence about genes, the brain and behavior in the context of autism and how it emerges early in life. This exercise could provide a rational basis for a range of options for identifying children at risk and developing effective pathways to care.

One size fits some:

Even if we have better screening tools, we don’t know that screening every child at the doctor’s office would identify more children with autism than would other surveillance methods that can pick up these children in different community settings. These settings could include maternal and child health programs, social programs and daycare centers.

The best options are likely to vary by community. For instance, where I live in Quebec, there are no screening programs for autism yet, and the wait time for diagnostic and intervention services is a serious concern. If we implemented universal screening in family medicine practices, even greater numbers of concerned parents would end up on waitlists for the services they need, and socioeconomic disparities in access to care would increase. However, the province does have strong community-based child health programs where identification and support strategies may find a better home.

So instead of recommending universal screening as a one-size-fits-all solution, we should thoughtfully consider how best to identify at-risk children in different communities, piggybacking on strong, existing programs. This approach is also consistent with the United Nations’ Millennium Development Goals. Although the goals address challenges that are broader than autism — they include poverty and education gaps — the United Nations calls for strategies that focus on process rather than targets and in which success would come from building on community strengths.

I don’t think there will ever be agreement on universal screening. But now is not the time to take sides. It’s the time to ask better questions.

 

Mayada Elsabbagh is assistant professor of psychiatry at McGill University in Montreal, Canada.


  • Frank Kelly

    Any early screening (before age 4) should rely on biomarkers (e.g. inflammation, microbiome etc.) rather than behavioral because (a) the behavioral tests can give very variable results at different ages (b) an ASD diagnosis can become an ADHD diagnosis later in life (or vice versa). A biomarker based diagnosis – even if not perfect – should at least get us a bit closer to the underlying mechanisms that result in synaptic dysfunction.

    Until we have those biomarkers (one for each autism subtype) discussion of screening is a moot point as the behavioral screens are almost useless before age 3 and will be quite variable for many childhood years.

    Until then I think the best approach is to train PCPs to recognize the behavioral symptoms, train enough neuropsychologists to meet that demand and THEN train enough people in behavioral techniques (e.g. ESDM, ABA, PRT) to meet the demand that this pipeline will create.

    • Cathy

      Good comment, but I disagree.

      Joint attention, responding to name, speech-language delays, and some other stereotypical behaviors are actually pretty easy to pick up before age 3. Aside from genetic testing, which Mayada mentions, biomarkers really aren’t a reliable alternative..

      In the U.S. screening is also done by local school districts, not just PCPs. Early Intervention services are provided to families at no cost in neighborhood schools, not just by health care providers.

      It’s a workable model, less costly and with less waiting time..I’m surprised Canada doesn’t have something similar in place.

    • Seth Bittker

      I completely agree with your suggestion of using biomarkers. There are a number of biomarkers in the literature that could be used now but are not used for some reason. It seems to me that it should be standard practice to give toddlers who appear to be at risk of autism blood and urine tests to access:
      1) Oxidative stress. Perhaps by looking at 8-hydroxy-2′ -deoxyguanosine (8-OHdG) in urine.
      2) Sulfation deficits. Plasma sulfate levels.
      3) Methylation deficits. Ratio of oxidized to reduced glutathione.

  • M

    I am against mandatory screening. Try seeing this from a social perspective: As an autistic individual, I choose to hide the fact that I am autistic from the world, my peers, my co-workers, anyone but my closest companions. Why?… to avoid discrimination. My autism hasn’t caused me problems since elementary school, but the diagnosis haunted for the rest of my education. In middle school, and then high school, I was verbally mistreated, isolated, even abused, at the hands of teachers and counsellors who choose to treat me as though I were incapable and unintelligent, no matter how often I proved the opposite. Graduating trilingual wasn’t enough for them, earning English Honours wasn’t enough for them, being perfectly social wasn’t enough for them; proving that I could every time they said I couldn’t, wasn’t enough for them. The word “autism” had become taboo.

    Being diagnosed never helped me to begin with, either. I had some basic speech therapy for a couple of years growing up to correct an English-sounding accent caused by my CAPD leading to mistranslations in the pronunciation of some words… but other than that, I over-came the rest, myself. Hypersensitivity, I adapted to. Sensory-overload, I learnt to manage. And the struggle against early speech delays only made me better at learning foreign languages then the average person by the time I was a pre-teen. Again, none of this was enough for anybody. I was still treated like a lesser being within the educational system, because the use of a single word had been associated with me, and the concept of autism sub-types, or autism-spectrum, is lost to the average person. The greatest challenge in my life caused by my autism, has never been the autism itself, but the way I have been treated for being autistic.
    Even when I reported the abuse happening to me to school administration, my diagnosis was used against my claims to protect school reputation – “she’s autistic, so she’s just being sensitive” or “she’s autistic, so she’s just overreacting, there’s no abuse happening within our school” – despite that one of my abusers had a known record. “She’s Autistic” was used to cover up abuse. Simply wrong.

    My upbringing would have been better, if I had not been labeled. And it wasn’t until I graduated high school that I had the rights and ability to choose who knew what about me. And the increase in the quality of my life since I started hiding my diagnosis, is a stunning, and somewhat sad outcome. People simply treat me better when they don’t know I’m Autistic, and poorly, when they do know. At one point, in the 11th grade, upon learning of my diagnosis, I watched as a previously uninformed English teacher went from praising my writing skills and having only good things to report to my parents… to suddenly regarding me condescendingly, even talking to me slower, and reporting apparent behavioural problems that had magically just appeared – behaviours that didn’t describe me, and never had.

    Autism is genetic, so suspect at least one of my children will be autistic. However, I will never have him/her diagnosed; because I don’t want what I went through to be done to my child. Whatever challenges he/she has, I will guide him through, whatever skills and talents he has, I will nourish… just like I would any other child. But until discrimination is stopped and better public education about the autism spectrum begins, a diagnosis will do more to harm high-functioning autistics, than help them.

    Remember that if you’ve met one autistic, you’ve only met one autistic. I recognize that a number of autistic sub-types do have severe problems that affect their lives negatively, and are difficult to overcome. But my story is a common one, high-functioning autistics are very common, and many autistics are held back because they are raised to believe the can’t do anything by people who see only the diagnosis, and don’t know there’s different types of autism.

    The above story, is what mandatory screening will do to the population of high-functioning autistics unless measures are taken to promote positive autism advocacy, equal rights, and proper public education.
    . . .

    Please don’t try and debate this with me. As an advocate, I have often been faced by people who seem to think that treating people badly for who they are, is okay – if they’re autistic. I have no interest in debating this absurd concept. Abuse is wrong in any situation. Unless you have something positive to say, don’t say anything – and if you do anyways, don’t expect a response. I’ve had my say.

    • Ettina

      I think labels have value if the context is right. I was diagnosed at 15, based on my own suspicions. The diagnosis has made a huge difference for me, letting me understand why I struggle with things others find easy and find strategies that help me – especially with executive functioning challenges. It’s also enabled me to get some services, although that’s hit and miss.
      I often wish I’d known about autism from a young age, because I see that many of the strategies I’m using would have helped me a lot more if I did them from the start. But I don’t know if my parents could have found those things without my help, and the more standard approach of ABA would have been awful for me.

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