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News

Parental concern may skew scores on autism test

by  /  14 August 2017
Cause for concern: Parents who are not concerned about autism may ascribe certain features of the condition to shyness.

kupicoo / iStock

A widely used test for diagnosing autism may miss children whose parents are not concerned that their child may have the condition, according to a new study1.

The tool, called the Autism Diagnostic Interview-Revised (ADI-R), is a 93-item questionnaire that caregivers fill out. It is often used with another test, called the Autism Diagnostic Observation Schedule (ADOS), that clinicians complete. Results on the two tests usually agree, but children who score high on the ADOS sometimes score low on the ADI-R.

The study provides a possible explanation for this mismatch: Some parents do not recognize autism features in their children, or do not consider them to be problematic.

“There’s huge variation in how much parents are aware of the social deficits associated with autism,” says senior investigator Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. Lord is co-creator of the two tests.

The findings drive home the importance of using multiple tools when diagnosing autism, says Fred Volkmar, director of the Yale Child Study Center, who was not involved in the study. “And regardless of which instruments you use, you have to have good clinical judgment,” he says.

Test mismatch:

Lord and her team worked with 697 toddlers aged 35 to 47 months whose parents agreed to autism screening, in many cases because the children showed some signs of behavioral or language difficulty. The children are all participants in the Norwegian Mother and Child Cohort Study, which follows more than 100,000 women and their children, starting when the children are in utero.

Separate groups of researchers administered the ADI-R to parents and filled out the ADOS. Afterward, a larger team of clinicians used the results, along with additional assessments, such as a physical exam and an expert’s evaluation of the child’s behavior, to diagnose each child.

The researchers excluded 16 toddlers already diagnosed with autism-related syndromes or who have severe sensory or motor impairments. Of the remaining 681 toddlers, 66 received a diagnosis of autism, pervasive developmental disorder-not otherwise specified or Asperger syndrome. (The latter two are not offered as diagnoses in the United States, but are still in use in Norway.)

About half of the remaining children were diagnosed with another condition, such as a language disorder or attention deficit hyperactivity disorder. The other half did not meet the criteria for any condition. The findings were published 22 June in Autism Research.

The ADOS results generally agreed with the clinicians’ assessments. But when the team looked closely at the ADI-R data, they found an important distinction in how well that tool performed.

Among 48 toddlers whose parents reported being concerned that their child could have autism, 26 children received an autism diagnosis. The ADI-R correctly flagged 22 of these children, or 85 percent.

Among 400 children whose parents did not suspect autism, 37 received a diagnosis. But the ADI-R flagged only 21 of them (57 percent). In other words, clinicians would have missed 43 percent of the children with autism if they had used the ADI-R exclusively to make a diagnosis.

Keeping score:

Toddlers with autism who screened negative on the ADI-R generally have better intellectual and verbal abilities than those who screened positive, the researchers found.

Parents who are not concerned that their child has autism may be more likely to ascribe certain features of the condition, such as a lack of eye contact, to shyness or immaturity, the researchers say.

“If you’ve never really thought about autism, there are really subtle things that we [clinicians] all recognize but parents would not automatically think about,” says Connie Kasari, professor of human development and psychology at the University of California, Los Angeles, who was not involved in the study.

The findings may help to explain why studies comparing the ADOS and ADI-R in the U.S., where autism awareness is relatively high, find better agreement than those in other countries.

Researchers should explore ways to adjust clinical tools to account for parental awareness and other factors that skew screening test results, says Donald Oswald, director of diagnostics and research at Commonwealth Autism, a nonprofit organization based in Richmond, Virginia, who was not involved in the study. “The prospect of such an undertaking is daunting,” he says, “but progress in this area could have a substantial payoff in terms of improved utility of parent-report and parent-interview instruments.”

In the meantime, Lord and her colleagues recommend using multiple screening measures. They are revising the ADI-R to incorporate parental concern as a factor, and may adjust the scoring system for children whose parents are not concerned about autism.


References:
  1. Havdahl K.A. et al. Autism Res. Epub ahead of print (2017) PubMed
  • Planet Autism

    “Parental concern may skew scores on autism test”

    Shouldn’t the name of this article be “Lack of Parental concern may skew scores on autism test”

    • Ethyl

      It’s okay if parents mess up. C. Lord will fix it for them.

      “In the meantime, Lord and her colleagues recommend using multiple
      screening measures. They are revising the ADI-R to incorporate parental
      concern as a factor,_____and may adjust the scoring system for children
      whose parents are not concerned about autism._____.”

      Something doesn’t seem right about that. Maybe it’s just me…

      • Planet Autism

        Almost makes you wonder whether the ADI-R is worth it. On the one hand, you get situations like we had, where the child scored well within clinical range on the ADI-R, only just missed cut-off on ADOS-2 and the clinicians ignored the high score on the ADI-R and didn’t diagnosed because cut-off was missed and on the other, tinkering with ADI-R when parents are in denial. None of it works and it all boils down to the fact that these tools are optional and it is ALL down to the experience, knowledge and skill of the person administering the tools and analysing it in context. Knowing what to look for, in ‘high-functioning’ individuals especially if they are older children.

        • Ethyl

          It is not necessarily denial…it may be an open mind. When my son was diagnosed, my family was all “there’s nothing wrong with Ben.” I was so hurt because all these doctors/teachers/”professionals” were telling me there was. It took me a long time to realize that he was who he was. What’s wrong with that? I have 2 questionably Dyslexic brothers. They don’t know they aren’t supposed to be successful, especially the lawyer…~although~, he is a ~lawyer~…

          The only advantage would be special services in school. We ended up homeschooling in high school anyhow, not willing to accept he was “behaviorally disordered”. He is unique. He doesn’t fit the school mold. He is finding his own path…and when he needs something, we will get if for him, hopefully. He has to make his own path, and he is much stronger than I ever was.

          Regardless of whether one gets “special help”, life is still a crap shoot. And I am so sorry, but I just don’t trust science to do the right thing for autistics. They don’t have the best track record. Parents have been caring for their autistic children since the beginning of time. If they don’t trust themselves to do that, no scientist is going to make it better.

          • Kal

            I too have rejected behavioralism-based therapies and the deficit-focused approach. But I did find the diagnosis helpful because it lead me to start looking up resources written by autistic adults. Also some of the better books on communication for autistic kids (Play to Talk, Life Animated) were a lot more useful than the usual parenting books. I found parenting resources intended for a general audience to be completely unhelpful in teaching me how to relate to my child.

            Even without a diagnosis, an autistic kid will be told all the time to just be more normal and why can’t they do X like other kids, etc. I know that from my own personal experience. The diagnosis helped me to embrace my daughter and also to finally accept myself after a lifetime of telling myself to just act more normal. My goal isn’t to normalize her but to have her grow up happy and proud of who she is.

          • Ethyl

            I did that, too, looked for Autistic adults. At the time, there were 2 people…Mel (Amanda) Baggs, and Larry Arnold, mostly…Wait, four: the ABFH…and Autism Diva. There were a lot of others, but those stay in my mind. They gave me hope. They were really good people, and to me, that is the most important thing. It’s all I ever wanted for B. And he is. Regardless of what Simon Baron Cohen thinks.

            Yes…you are right about general parenting books!!! There are positive things you can do that are very helpful. Us old gals need to get together and write one for those coming up. The first chapter would be titled: “Chill, Mama. Going Neurotic Isn’t going to Help”.

            But…that label isn’t going to stop people from giving kids guff. So many people say it is an excuse for bad behavior. I can see where self acceptance could come from it, though. We all do the best we can and autism makes it challenging.

            I like the way you think. Your voice needs to be heard in this cacophony that is autism science. In all the world of experts, only the parents are truly responsible in the end. A good attitude has to help, and you have it.

          • Ethyl

            https://www.amazon.com/Play-Talk-Practical-Late-Talking-Conversation/dp/0978832027 https://www.amazon.com/Life-Animated-Sidekicks-Heroes-Autism/dp/1484741234/ref=sr_1_1?s=books&ie=UTF8&qid=1503065935&sr=1-1&keywords=life+animated

            I guess I shouldn’t be so critical of science. It gets me bumped off the page. But my opinion is not as important as what helps. Parents are getting wiser, no longer waiting for answers, cures. They really should put the same buffers on that parents have to, to listen to some of the horrible things they say about us and our children.

  • Wolfgang Engler

    Current Science says: Spectrum is really composed of unknown numbers of clustering etiologies. ADI-R and ADOS are just qualitative tools with bad (inter-rater) repeatability and worse (ground-truth) reliability.

    Lord says: Ask Mom and Dad, “how peculiar is your kid?”; and use their “unbiased” expertise to improve Autism Diagnosis reliability? She really concedes: Current best practices in Autism Diagnosis reduce to pure reliance on Confirmation Bias.

  • Kal

    I didn’t find questionnaires to be useful before my daughter was diagnosed. It was too easy to dismiss questions as something that didn’t apply (for instance we didn’t call our toddler by her name when she was young so of course she didn’t respond to her name) or to not understand what behavior a question is trying to ask about, or to just dismiss it as something that of course she does because you’ve kind of sort of seen it once, maybe. Some things I didn’t remember my child doing but when we were at the doctor’s office my husband said, “oh yeah sure I’ve seen her do that” and I just shrugged and checked it as ok. Later when I asked him in more detail he couldn’t actually recall seeing the behavior.

    What I did find very useful were the autism videos put out by the Kennedy Krieger Institute. They have a 10 minute video on YouTube and you can sign up to watch more on the website. As soon as I started watching them I knew my child was similar to the children shown. It’s one thing to read about what you can expect of a child at a certain age, but it’s quite another to actually see it.

    I think researchers need to focus less on writtten questionnaires for parents, and instead add media that shows what is and isn’t a sign of autism. Something like that could even be distributed as an app to reach a much wider audience. Diagnostic tools need to take advantage of modern technology rather than being text based as if that’s the best we have available.

    • Ethyl

      There was a study done in which they used average people and showed them videos. The idea was to spot the autism. They were as accurate as experts. You are on to something…

  • Ethyl

    I never noticed this before-autism #'s were not based on actual children diagnosed, but who "should" be diagnosed? .https://t.co/cTu8DByQt1 pic.twitter.com/xjbwHlVxIR— Dad always said (@usethebrainsgod) April 3, 2017

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