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News

Parents miss signs of autism in their daughters

by  /  5 October 2016
diagonal shadow of a family--parents and a girl
Subtle signs: Parents tend to chalk up their daughters’ autism features to shyness or quietness.

Konrad Wilczynski / Getty Images

Parents of girls with autism are significantly less likely than those of affected boys to voice concerns about their child’s social behavior1. The finding hints at another hurdle in the quest to help girls with the condition.

About one girl for every five boys receives an autism diagnosis. Clinicians identify girls with a mild form of the condition nearly two years later than boys. These girls also face a longer wait for a diagnosis after their features emerge.

Researchers have suggested that clinicians overlook the signs of autism in girls, which may be different from the ones that boys with the condition present. The new study found that parents may similarly miss the signs.

“In everyday activities with their families, [girls with autism] might not be doing things that really stick out to caregivers,” says lead investigator Lauren Little, assistant professor of occupational therapy education at the University of Kansas in Kansas City. The results appeared 18 August in Autism.

When parents overlook signs of autism in their daughters, it may have real clinical consequences: Some studies suggest that the earlier children with autism enroll in behavioral programs, the better their outcomes.

“The parents are really the ones we rely on to bring the child to the attention of the medical community,” says Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, who was not involved in the study.

Social screening:

The researchers reviewed medical records from nearly 700 children who had come to the University of Kansas to be evaluated for autism or another developmental disability. They identified 63 girls who received an autism diagnosis between the ages of 1 and 12 years. They compared these girls with 63 boys who have autism, as well as 54 boys and 62 girls of similar age and intelligence with other developmental disabilities.

At the start of the diagnostic process, caregivers listed their top three concerns about their child’s behavior. Parents of boys who went on to be diagnosed with autism were about three times as likely to report worries related to social interaction as were parents of girls with autism. The parents’ concerns included worries that their child had few friendships or had difficulty getting along with peers.

“I think it is reasonable to say that fewer concerns about social impairments would decrease the likelihood of girls being referred and thus ultimately receiving a diagnosis of autism,” Little says.

It is unclear why parents did not recognize their daughters’ social difficulties. Girls may have better social skills than boys, says Rene Jamison, associate professor at the University of Kansas. A 2014 study found that girls outscore boys on a measure of friendship quality. Girls with autism have roughly the same scores as typically developing boys.

They may also be better able to mask their social quirks. A study last year found that preschool girls who go on to be diagnosed with autism tend to mirror others’ behavior during social interactions, whereas boys who are later diagnosed isolate themselves.

Probing questions:

Parents of girls may also be more likely to chalk up social difficulties to shyness or quietness, Little says.

The researchers also found that parents of girls with autism are three times less likely than those of girls with other developmental disabilities to list concerns about so-called ‘externalizing’ behaviors, such as tantrums or aggressive outbursts. Together, the findings may explain why some girls with autism are diagnosed late — or not at all.

“Their social interaction difficulties are not as pronounced as boys’,” Little says. “They’re not causing problems for their families.”

Finding more of these girls — and making sure they are diagnosed early — may require pediatricians and other clinicians to ask detailed, targeted questions. “If somebody says, ‘Well, my daughter is just really shy,’ we should ask, ‘Well, what does shy look like?’” Little says. “We might have to probe a little bit more.”


References:
  1. Little L.M. et al. Autism Epub ahead of print (2016) PubMed
  • Lily Sullivan

    I have 2 children, both diagnosed late to be on the autism scale. My son, the firstborn, was the quiet, almost non-verbal, sweetheart of a baby. He didn’t say his first real words until I talk him some sign language. Those first words were, “Dhang ou” – thank you, to a cashier when she handed back his cracker box, after they had been paid for, with the ASL sign for ‘thank you’. He had gross motor-skill delays, which the doctor begrudgingly had him sent to therapy for. She said he was probably just “slow” – her words. He went to a German immersion elementary school and did well there. He was diagnosed as being high-functioning autistic at age 12, because the pediatrician wouldn’t listen to me about him possibly being autistic before that. Thankfully, he is now a bi-lingual senior in high school, looking to go to college next year, no thanks to the school system or the medical community.

    My daughter was the early talker, easily potty-trained, made friends with everyone, danced (which seemed to be the only thing she would calm down for) and even joined the dance troupe. She loved being the center of attention. She also went to the German immersion elementary school. She slowly became argumentative, to the point we had her tested at age 9. She was given many tests, none of which she was able to complete, because of her curiosity and fidgety-ness. The diagnosis – ODD, and possibly ADHD, which she was briefly treated for with medication, which didn’t work. She went to therapy and the therapist worked hard to try to help her understand herself. She had her tantrums through age 13, she had night terrors until age 11, still has nightmares at times, for no real reason. She was diagnosed with Celiac disease at 11, and the gluten-free diet really helped her. The ODD was dropped, although she still fidgeted for everything but dance. We were finally able to get her tested again at age 15. This time she completed all the tests and she was finally diagnosed as high-functioning autistic and bi-polar depressive.

    When puberty struck her, it hit her hard. Anxiety reared its ugly head. She began having dark thoughts about herself. She didn’t like feeling like she did, but she couldn’t stop. Now she is on proper medications, and seeing both a therapist and a psychiatrist. She was not the shy wallflower, ever, until puberty hit and she began to pull away from her favorite past time, theatre, and many of her friends.

    I doubt she is the only exception to this idea of a painfully shy girl being possibly autistic. The article describes me, before I found the therapeutic benefits of acting. Please don’t make the mistake of missing the ones who are bossy, or disruptive, or just quirky. Thanks.

    • Nameless

      I’m so, so glad I found your comment. I really relate to what you’ve said about your daughter as I went through the exact same thing. I’m a bipolar, formerly loud and wild theatre kid turned anxious wreck once puberty hit. I like to think that acting is a skill I continue to use today for assisting in social situations (improv skills!) and even as a means of masking anxiety. It’s incredibly validating to know I’m not the only one who’s had this experience. Thank you for sharing.

  • Liz Cook

    I was excited to see this article.. and then I read it and was not so excited anymore. I was hoping for better than “it’s the parents’ fault for not reporting better” and more of this is what you look for information. I have to autistic boys. My best friend use to work with my eldest son and has years of experience with ASD boys…. but her daughter was just diagnosed with ASD at 8 and she is crushed because she didn’t know when she worked the field. Her daughter is like Lily described. Not introverted in the least and we honestly thought she was going to be bi-polar like her older brother. This article fell flat of my expectations. If you are going to tell us we are “missing the signs” you should probably better list what those signs are.

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