Not on the Same Page: When Families and Doctors Differ on Autism
Families often come to psychologist Emily E. Neuhaus with one question: Does their child have autism? Maybe their concerns are their own, or come from the child's pediatrician or teacher.
Often families agree with her answer. "We're on the same page as to how their child is doing. We see the same strengths and weaknesses. When that happens, they are more likely to agree with the therapies we recommend," recalled Dr. Neuhaus, who is also a research fellow at Seattle Children's Hospital in Washington State.
But that's not always the case. "Sometimes I work with families where we're seeing things differently. It may be that I'm pointing out difficulties they're not seeing, or they may be seeing difficulties they feel a clinician is not seeing."
As a researcher, that led her to a question of her own: Are there certain things about a child or family that increase the odds of a disagreement with healthcare providers about autism?
The answer is important because these differences of opinion could delay autism diagnosis and treatment, and even keep children from enrolling in autism research studies. Also, children who receive intervention services sooner make more developmental gains than children who miss out on such therapies.1,2
Looking for Answers in the SSC Autism Project
For answers, she looked to the huge amount of data collected by the Simons Simplex Collection (SSC) autism research project. In that project, 2,759 families throughout the United States and Canada took part in a lengthy interview about their child's autism symptoms, called the Autism Diagnostic Interview. At the same time, health care providers completed a similar, in-person evaluation of the children, the Autism Diagnostic Observation Schedule. A child's score depended on how many symptoms the parent or clinician observed, and how often the symptoms occurred. Scores above a certain minimum level indicate autism.
The SSC children all have some degree of autism. Not surprisingly, their parents and professionals largely agreed about the children's symptoms, based on a comparison of collective scores from their respective surveys.
But Dr. Neuhaus and her research team found greater differences between families and professionals when the child had:
- Higher intelligence,
- Better "adaptive" skills (such as brushing teeth, dressing, and other skills of daily living),
- More behavior problems,
- Household income below $80,000 a year, or
- African-American race.3
The researchers could not say in which direction those differences ran, whether parents or clinicians consistently rated children in those categories as having milder or more severe symptoms than the other.
The study indirectly pointed to difficulties in diagnosing children with higher levels of intelligence and daily living skills. Although it did not address the age of first diagnosis, other studies have found that children with milder forms of autism tended to be diagnosed later. For example, a study conducted in Pennsylvania a decade ago found that children with Asperger's Disorder were more than twice as old as children with classic autism when first diagnosed.4 Interestingly, other research shows that parents usually notice a developmental problem in their child first.5
Dr. Neuhaus said that clinics that use a team approach when diagnosing children may hear different opinions among professionals about whether "kids who are quite bright and are demonstrating some skills" have autism spectrum disorder (ASD) or not.
The Problem with Behavior
Parents think, 'Is it autism or ADHD, or is it autism or anxiety?'
Problems with aggression, anxiety, paying attention, and mood also seem to cloud the ability of doctors and parents to agree on autistic symptoms. Children with autism often have other psychiatric conditions.6-9 Is it hard to untangle autism from those other disorders?
Certain behavioral symptoms – such as poor attention and emotional outbursts – can confuse parents, teachers, and clinicians alike, Dr. Neuhaus said. Is a child having trouble focusing in class because he has attention deficit disorder, or because he is bothered by the bright lights and noise, a sensory symptom of autism? "Parents think, 'Is it autism or ADHD, or is it autism or anxiety?' That plays into how schools see kids and what messages they give parents. Is something the child does a defiant behavior, or is it trouble with transitioning?" she asked. Children with autism often have problems transitioning or moving to different activities and places during the day. "Insistence on sameness," in fact, is a symptom of autism.10
The researchers did not have enough information to conclude why families who were African-American, or had a lower income, showed larger differences in perspectives when compared with health care providers.
Regardless of the reasons, Dr. Neuhaus said, it's important for clinicians to be aware that certain family or child characteristics increase the risk for disagreement or miscommunication. "I think it's important to pause and kind of take an even more conscientious approach where there's more potential for miscommunication and for disagreements," she said. For example, health care providers could explain their evaluation procedures and invite parents to observe; they also could seek information from the child's teachers and coaches, according to the study.3
Being at odds with health care providers could put families at risk for a misdiagnosis or for a difficult experience during an evaluation, the study said. That also could delay interventions and keep children from participating in autism research studies.3 Many studies require both families and researchers to rate a child as having autism, Dr. Neuhaus explained. Studies should include participants from diverse backgrounds, including race and income, so that the research captures the full range of autism.
Finding the Right Diagnosis and Therapy
Everyone kept saying, 'Boys develop slower than girls, and hang tight.'
Several parents in the SSC study said they did not have problems getting a diagnosis for their children or having their concerns taken seriously by health care providers.
However, one SSC mother said she did experience some confusion surrounding her son's initial diagnosis, around 2005. By the time he was three, he had a speech delay, repetitive behaviors, problems with acting out, and poor sleep, recalled Michelle Meitz, of Illinois. "He wasn't speaking in sentences and asking for things," she said. "Everyone kept saying, 'Boys develop slower than girls, and hang tight.'" While watchful, his pediatrician was not ringing alarm bells about autism at that time.
When he was 3½ years old, a psychiatrist diagnosed the boy with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, or PDD, for short). At the time, PDD-NOS was a catch-all diagnosis that meant someone met some, but not all, of the symptoms required for an autism diagnosis. The Meitz family left the appointment without a clear understanding of that. "We didn't know what PDD was, and it was explained that it was something he might grow out of. We did not have a clear definition of it being on the autism spectrum," she said.
It wasn't until the family joined the SSC project 1½ years later that they received a definitive diagnosis of an autism spectrum disorder. That diagnosis, in turn, led the family to autism behavior therapies that helped. "The behavior was coming from his inability to process things like a typical child," she said. "You don't want to slap a label on someone, but it really did help, once we knew he was on the autism spectrum."
The PDD diagnosis that confused the Meitz family, and many others, was dropped by American psychiatrists when they revised their diagnostic manual in 2013.10 They replaced PDD, Asperger's, and autistic disorder with one label for all conditions: autism spectrum disorder, or ASD. Ironically, research into SSC families like hers played a role in that change. Although they were using the same methods, researchers in the SSC project were not consistent when deciding which of the three autism-related diagnoses to give a child.11 That helped make the case for using one diagnosis of ASD to describe the different ways autism may appear in a person.
The Interactive Autism Network thanks parents in the SSC project for their willingness to share their experiences about autism.
- For information on autism in young children, please see the IAN article, "Autism in the Toddler Years: Getting a Diagnosis, Getting Help" and the one-hour video, "Webinar on the Early Diagnosis of Autism" with Dr. Ami Klin.
- For information on getting diagnosed as an adult, see the IAN blog, "Better Late than Never, Perhaps: Getting a Late ASD Diagnosis
- See "Results of Research Made Possible by Simons Simplex Families" for a list of other autism studies involving SSC families.
- Take our nonscientific poll: What was your experience with your first autism evaluation?
- Volkmar, F. R., Rogers, S. J., Paul, R., & Pelphrey, K. A. (Eds.). (2014). Handbook of autism and pervasive developmental disorders (4th ed.). Hoboken, NJ: John Wiley & Sons.
- Wiggins, L. D., Baio, J., & Rice, C. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. Journal of Developmental and Behavioral Pediatrics : JDBP, 27(2 Suppl), S79-87. doi:00004703-200604002-00005 [pii]. Abtract.
- Neuhaus, E., Beauchaine, T. P., Bernier, R. A., & Webb, S. J. (2018). Child and family characteristics moderate agreement between caregiver and clinician report of autism symptoms. Autism Research : Official Journal of the International Society for Autism Research, 11(3), 476-487. doi:10.1002/aur.1907 [doi]. Abstract.
- Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480-1486. doi:10.1542/peds.2005-0185. Abstract.
- Zuckerman, K. E., Lindly, O. J., & Sinche, B. K. (2015). Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis. The Journal of Pediatrics, 166(6), 1431-9.e1. doi:10.1016/j.jpeds.2015.03.007 [doi]. Abstract.
- Joshi, G., Petty, C., Wozniak, J., Henin, A., Fried, R., Galdo, M., . . . Biederman, J. (2010). The heavy burden of psychiatric comorbidity in youth with autism spectrum disorders: A large comparative study of a psychiatrically referred population. Journal of Autism and Developmental Disorders, 40(11), 1361-1370. doi:10.1007/s10803-010-0996-9 [doi]. Abstract.
- Leyfer, O. T., Folstein, S. E., Bacalman, S., Davis, N. O., Dinh, E., Morgan, J., . . . Lainhart, J. E. (2006). Comorbid psychiatric disorders in children with autism: Interview development and rates of disorders. Journal of Autism and Developmental Disorders, 36(7), 849-861. doi:10.1007/s10803-006-0123-0 [doi]. Abstract.
- Matson, J. L., & Nebel-Schwalm, M. S. (2007). Comorbid psychopathology with autism spectrum disorder in children: An overview. Research in Developmental Disabilities, 28(4), 341-352. doi:S0891-4222(06)00049-7 [pii] Abstract.
- Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921-929. doi:10.1097/CHI.0b013e318179964f [doi]. Abstract.
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Association.
- Lord, C., Petkova, E., Hus, V., Gan, W., Lu, F., Martin, D. M., . . . Risi, S. (2012). A multisite study of the clinical diagnosis of different autism spectrum disorders. Archives of General Psychiatry, 69(3), 306-313. doi:10.1001/archgenpsychiatry.2011.148. Abstract.