Max, a 3-year-old boy, is accompanied by his mother for a health-supervision visit. Two previously scheduled well-child visits have been postponed by parents because of busy work schedules. On this visit, Max's mother says that Max seems very healthy but that she is feeling frustrated by his “not listening,” his stubbornness, and his lack of cooperation. Max refuses to fall asleep unless he is in his parents' bed and even then wakes up and disturbs his mother's sleep. The sleeping situation is particularly difficult because she and her husband both work long hours and commute to the Silicon Valley. This necessitates a “tag team” approach to parenting. Max's father takes him to child care (in a home-based program for 12 children) at 7:30 am. The father returns home in the evening at 8 or 9 pm. Max's mother leaves home at 5 am and picks Max up at 6 pm. She says that the hours and the commute are draining but unavoidable because of their house payments and the uncertainty of the economy. With tears in her eyes, she says that she feels terrible admitting it, but she finds it easier to deal with the demands of work than with Max.
During the physical examination, Max is squirmy but cooperative as long as the pediatrician keeps him distracted with a series of small toys. He plays with the wooden trains on the examination table and explores them closely, spinning their wheels. The physical examination is normal with 1 exception: Max is unwilling to interact with the examiner until she sits down, watches him explore the room, and comments on what he is doing without asking him questions. He then points to toys on the shelves he wants and takes them from her without making eye contact. Max's mother asks him to say “thank you,” but he does not respond. She says that he is much more talkative at home and is able to recite passages of dialogue from his favorite videos.
The pediatrician notices that Max opened his mother's wallet and is playing with her credit cards. The mother says that stacking and playing with cards is a favorite activity. Max also loves videos and will watch his favorite tapes 2 or 3 times a day if he can. She is a little worried that the many hours of television he watches each day may contribute to his having trouble sitting still for stories at child care.
Max seems to like the child-care setting, although he rarely plays with other children. However, he generally resists playing with parents as well, although he seems happy to see them when they come to pick him up and does not like being left in the morning. Max continues to play on the floor of the room and does not look up.
Max was a full-term 8-lb, 5-oz baby without prenatal or perinatal problems. He was “colicky” until 5 months of age and had 6 ear infections but none in the past 6 months. Max met early language milestones appropriately, cooing at 3 to 4 months, babbling at 6 months, using a few words by 18 months, and 2-word sentences at 2 years. Motor milestones were delayed, but by 18 months he was walking independently. When asked about a family history of neurological or developmental difficulties, it was revealed that the mother's brother was diagnosed with schizophrenia during adolescence.
The pediatrician realizes that she needs more time to assess Max. She asks his mother to schedule another appointment to evaluate his behaviors and development in more detail.
↵* Originally published in J Dev Behav Pediatr. 2002;3:96–101.
- Copyright © 2004 by the American Academy of Pediatrics
“Not Listening, Stubborn, and Problems With Sleeping”—Interpreting a Parent's Concerns at a 3-Year-Old's Health-Supervision Visit*
Dr Martin T. Stein
The concerns expressed by this mother at a pediatric health-supervision visit illustrate a recurrent theme in primary care pediatrics. The “chief complaint” (in this case, a set of behavioral concerns) provides an opportunity to develop a behavioral and psychosocial profile of the child and his family. What is the most effective way to explore these behavioral concerns to discover their meaning for a particular child and to guide the parents in their understanding and modification of the behaviors? The time constraints of pediatric practice encourage thoughtful, focused questions to achieve these goals. The process of synthesis and interpretation assumes skills that are available to pediatricians.
Max's pediatrician was a good observer of behavior. Her office observations of the child produced clues that suggest, as one possibility, a more pervasive problem in social and motor development. The case is a stimulus to address the following questions: How does the process of synthesis and interpretation of behaviors occur in clinical practice? What observational skills are used? How can they be developed and taught? Max is 3 years old. Are there specific observations and questions directed to the parent and the child at 3 years that are likely to unlock significant deficiencies (and strengths) in development and behavior? In the case vignette, the method used was clinical observation. How would a screening instrument compare in productivity?
I asked Meg Zweiback to comment on the case. Ms Zweiback is a pediatric nurse practitioner with a community practice in developmental and behavioral pediatrics in Oakland, California. She is an Associate Clinical Professor of Nursing at the University of California, San Francisco, and is the author of several books for parents of young children. In addition, the commentaries of several clinicians who responded to the case on the Web site discussion are included.
“Not Listening, Stubborn, and Problems With Sleeping”—Interpreting a Parent's Concerns at a 3-Year-Old's Health-Supervision Visit*
The pediatrician asks Max's mother to schedule a return visit with Max and both parents because of her concerns about his atypical behavior and development, which alert her to the possibility of an autistic spectrum disorder (ASD). By observation and report, Max is limited in his ability to communicate verbally and nonverbally with his mother and the pediatrician. In the office and at home, he plays with parts of toys and nontoy objects in a repetitious and nonimaginative manner. He is reported to have difficulty playing with peers. At home he resists playing with his parents and prefers to watch videos, memorizing and repeating the dialogue. Although Max's mother does not express concerns about his development, her complaints about “not listening” and “stubbornness” may reflect her awareness that Max is not responsive to her, and her frustration in caring for him may be a result of a lack of reciprocity in their relationship. Max's sleeping difficulties are a further drain on the family's energy and resources.
The next visit should provide time for a longer direct observation and a detailed picture of Max's behavior with the parents. If both parents are involved in the process of evaluating Max, they will be better able to understand the pediatrician's concerns. If possible, the pediatrician should see Max and his family in a setting that allows for open-ended discussion among the adults while Max plays. Max's atypical behavior may not be apparent to the parents if they have not seen him play with other children. Max's limited interaction with the parents may be frustrating, but they may not realize that it is a problem.
The pediatrician can begin by expressing her concern to the parents that Max's language, communication, and play seem different from what would be expected of children his age. Because the concerns that they have expressed about Max's behavior may be linked to other aspects of development, she would like to hear more about their experience at home. She can explain that, because toddlers are often less interactive in a strange setting, the parents' observations will help set a baseline for Max's current abilities. Open-ended questions such as “How does Max like to play with you at home?” “What kinds of conversations do you have together?” and “What has Max learned to say or do in the past few weeks?” are questions that will help provide more information about Max's existing and emerging skills and also allow the parents to be reflective together about their observations.
The pediatrician can use this time to comment on Max's strengths, areas in which he seems to be doing well, and the ways in which his parents are doing a good job of caring for him. During the visit, the parents may express concerns about Max that they had not brought up on previous visits and now wish they had, or they may seem embarrassed that the pediatrician is noticing delays that they had not. It is important that the pediatrician create a “guilt-free zone” for the parents so that they will not feel that they are at fault for Max's difficulties.
Because children who are less communicative or playful do not give parents cues about how to engage with them, the pediatrician may be able to give suggestions for home activities that build on Max's current abilities. “Floor time” play, limitations on television, and verbal interactions that encourage Max to engage, however minimally, are interventions that can begin immediately. Questions about family support systems will help the pediatrician in guiding the family through the next stages.
The pediatrician needs to collect enough data on this visit to warrant further referrals and to assess the family's resources and strengths. Max, by history and observation, seems to meet Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria for an ASD.1,2 A standardized screening tool such as the Pervasive Developmental Disorder Screening Test (PDDST II/Stage I),3 might also be used to provide a quantitative measure of the probability that Max will receive this diagnosis. After this extended visit with the family, a return visit with parents should be scheduled to discuss the implications of the assessment and the need for further evaluation. The pediatrician may feel anxious about the news he or she is presenting and may be tempted to overload the family with information. However, it is not necessary to move the family too quickly to acknowledge a significant, lifelong disability that will change their family forever.4 Viewing the referrals as an opportunity to collect more information to help Max's development is usually enough to get a family to take action.
Max should be referred for an audiological assessment, an evaluation by a pediatric speech and language pathologist, and a neurodevelopmental evaluation by a developmental and behavioral pediatrician. His level of cognitive ability should be assessed, because children with ASDs have a high incidence of mental retardation. An occupational therapy evaluation may be appropriate to assess fine motor impairment and need for training in self-care skills. This comprehensive evaluation is necessary to ensure that overlapping areas of Max's development are considered before making a diagnosis.5 Ideally, these services should be provided in 1 setting by an interdisciplinary team, but it is more likely that the pediatrician will be making multiple referrals and will coordinate the assessment. Because Max is 3 years old, the family should also contact the local school district office of special education and submit a written request for an independent educational plan.6
While the evaluation is in progress, the pediatrician should ask to speak to Max's child care provider to get more information and to help parents decide whether this is the optimal setting for Max in the future. Most child care providers are eager to get consultation from professionals when they are concerned about a child and may be very willing to make adaptations if they are given guidance about a child's special needs.
The pediatrician should not forget that a major concern of this family is sleep. If the history indicates that the night awakening is secondary to a sleep association habit, it is likely that Max's sleeping difficulties will respond to the same behavioral strategies that work with most preschool children. A program of gradual withdrawal of parental help for falling asleep at bedtime will result in fewer periods of night awakening and will help all of the family members to sleep better.
- ↵American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, DC: American Psychiatric Association; 1994
- ↵Siegel B. Toward DSM-IV: taking a developmental approach to autistic disorder. In: Beitchman JH, Konstantareas M, eds. Pervasive Developmental Disorders. Psychiatric Clinics of North America, Vol 14. New York, NY: Saunders; 1991:53–68
- ↵Siegel B. Pervasive Developmental Disorder Screening Test (PDDSTII). San Francisco, CA: Pervasive Developmental Disorders Clinic and Laboratory, Langley Porter Psychiatric Institute, University of California, San Francisco: 2001
- ↵Allmond BW Jr, Tanner JL. The Family Is the Patient. 2nd ed. Baltimore, MD: Williams & Wilkins; 1999
- ↵Lotspeich LJ. Autism, pervasive developmental disorders, and Asperger. In: Steiner H, Yalom ID, eds. Treating Preschool Children. San Francisco, CA: Jossey-Bass; 1997
“Not Listening, Stubborn, and Problems With Sleeping”—Interpreting a Parent's Concerns at a 3-Year-Old's Health-Supervision Visit*
Web Site Discussion
The case summary for the Challenging Case was posted on the Developmental and Behavioral Pediatrics Web site ‡ (www.dppeds.org.list) and the Journal's Web site (www.lww.com/DBP). Comments were solicited.
Keith J. Goulden, MD, Edmonton, Alberta, Canada
The child presented is 3 years old and has symptoms suggesting a pervasive developmental disorder (PDD) or autism. These symptoms are subtle, and further evaluation of communication (both verbal and social), cognition, and sensorimotor function are required. The family will also need considerable support and information if this diagnosis is correct.
The keys to the diagnosis (which is commonly delayed until this age) are the recognition of “red flags” (echolalia, perseverative play, obsessionality) in the history, the observation of the child during play by a competent observer, and the knowledge that PDD/autism is in the differential. What is missing from the scenario is information from other observers of the child (most particularly, the day care), and a first step in the further evaluation of these symptoms would be to solicit this information using a structured questionnaire.
We are asked about how to develop/improve the skills necessary to assess this child, and the question could be made more specific: How can we ensure that the child with autism is identified as early as possible? This has been addressed recently in a practice guideline by the American Academy of Neurology and the Child Neurology Society and endorsed by the American Academy of Pediatrics.1
I have several personal suggestions:
All professionals dealing with children (including pediatricians, family practitioners, nurses, child care workers, early interventionists, etc) should know about autism and other developmental-behavioral disabilities and, in particular, the early (subtle) symptoms suggesting these conditions.
Community resources for assessing children with possible developmental-behavioral problems should be known to all with primary contact opportunities. I am not sure that the primary pediatrician should do much more direct assessment in this case, particularly if there is an early intervention program, communication disorders specialist, child psychologist, or developmental pediatrician or team available to carry out a more specific evaluation. As mentioned above, the collection of information from other sources such as day care staff may be an invaluable place to start this process. Given the symptoms presented, a “wait and see” approach to further evaluation is inappropriate. Intervention for children with autism is available and is most effective when initiated early.
The use of structured parent questionnaires such as the Parents' Evaluation of Developmental Status (PEDS)2 may enhance the ability of primary care providers to focus on developmental issues, although independent observation of the child at play is still helpful (especially when parents may not be concerned about a problem or where communication difficulties are present). Screening tests specific for autism (such as the Checklist for Autism in Toddlers3 [CHAT]) should be familiar to professionals seeing young children but are, at present, insufficiently sensitive to merit systematic use. I would be cautious about “screening” this child now, given the existence of symptoms suggesting disability, but screening tools are often used to give structure to informal observations of children.
From my experience working in a tertiary referral center, I would be surprised to learn that these parents were unaware of their child's differences. Day care centers, the extended family, or friends may have raised concerns earlier, or the family may have investigated information sources such as the internet. Such families may conceal their concerns until they are independently raised by the primary pediatrician, and the failure to raise concerns may be the most damaging “intervention” possible in this situation (since this may be interpreted as reassurance of normality). A direct question such as “What do you think the problem is?” or “What does the day care staff think?” may bring out the issues more quickly than another approach. This is probably one reason for the success of developmental questionnaires, as they indicate an interest in these issues and give permission to raise potentially painful questions. It is critical that primary care providers are comfortable in addressing these issues and, in particular, the possibility of uncertainty.
↵‡ A bimonthly discussion of an upcoming Challenging Case takes place at the Developmental and Behavioral Pediatrics Web site. This Web site is sponsored by the Maternal and Child Health Bureau and the American Academy of Pediatrics section on Developmental and Behavioral Pediatrics. Henry L. Shapiro, MD, is the editor of the Web site. Martin Stein, MD, the Challenging Case editor, incorporates comments from the Web discussion into the published Challenging Case. To become part of the discussion at the Developmental and Behavioral Pediatrics home page, go to www.dbpeds.org.
- ↵Filipek PA, Accardo PJ, Ashwal S, et al. Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology.2000;55 :468– 479
- ↵Glascoe FP. Early detection of developmental and behavioral problems. Pediatr Rev.2000;21 :272– 280
Lynn M. Wegner, MD, Morrisville, North Carolina
I agree with Dr Goulden's suggestions with respect to the evaluation direction and the need for a more specialized referral to assess Max's development and behavior. I do think the pediatrician could explore other issues.
I would like to address the family issues and possible emotional reactions of this child. It is very clear this family is living with a very high level of stress. The father's work hours may reflect a need to show how valuable he is to his company (and thereby avoid imminent downsizing) or may reflect his desire/need to avoid the issues surrounding his son's developmental and behavioral differences. In either case, the end result is that this father is not physically present at the end of this child's day.
Max's mother is assuming the major caretaking role in the evening (and, as we all know, the evening is the “second shift” for working parents). She admits she is feeling stressed and worried (about finances, Max, etc) and feels guilty about her frustration in dealing with Max. (She does not address her husband's absence in the evening.) Are we to infer both parents work in some aspect of information technology? What are her higher-order language skills? Does she have the “emotional vocabulary” to express her feelings to her son's pediatrician or, later, after her son's developmental differences are identified? Is she clinically depressed? Is she chronically sleep-deprived?
Max is giving all the adults in his life signs that he is reacting emotionally to his environmental surroundings. He “does not like to be left in the morning” at his home-based day care (presumably he has been there for a while and is familiar with the setting and the routine). He does not want to go to bed at night (and he should be tired enough to settle easily given his long hours at the day care), and he routinely awakens in the night prior to morning. Is Max showing signs of childhood depression? Are these signs of attachment disorder? This could certainly be included in the referral question to any specialist in addition to the language issues.
If the pediatrician wanted to address or “screen” the level of family stress, the Parenting Stress Index (PSI)1 could be used. I think it would be overkill in this situation as it is very apparent there is plenty of stress here, but if it was given separately to each parent, it might show widely disparate levels of stress in each. (By the way, this is an instrument to use for families with children who have extensive behavior/developmental differences. Many times these families look very “together” on the surface, but on probing, the areas of stress are identified. In this manner, the PSI can be used to facilitate talking with the parents about their level of coping.)
- ↵Abidin RR. The Parenting Stress Index. 3rd ed. Odessa, FL: Psychological Assessment Resources, Inc; 1995
Anna H. Baumgaertel, MD, Nashville, Tennessee
I agree with what has been said about the differential diagnosis. However, if there is a concern about attachment (and I would certainly have that concern), I do not see behavior management as the appropriate approach to Max's problems. This child's emotional needs and requirements for a healthy psychosocial development are most likely not being met and that needs to be addressed. The child may not be the problem in this family, just the symptom.
I see myself as an advocate for children, not for lifestyles. I always take a caregiver/day care history, and there are many situations in which I address with parents what choices or options there are to improve their availability to their children. Even in very poor families, there are often options that have not been considered, and parents are receptive when one takes the time to explain the basics of emotional development and health.
C. Eve J. Kimball, MD, Reading, Pennsylvania
Dr Baumgaertel has expressed my feelings very well. It is our obligation, as advocates for children whose opinions are respected, to advocate for parent availability to children. As this case demonstrates, children of all socioeconomic backgrounds are subjected to 8 to 12 hours of day care as long as 5 (some even 7!) days per week. In some centers, caretakers are rotated “so that the same person doesn't have to deal with the difficult children all the time.”
Knowledge of what goes on inside the doors of the family home or day care is extremely difficult to come by and so critical. Perhaps the persons with the most knowledge and training (eg, pediatricians and developmentalists) should make home/child care center visits a part of our evaluation. The obvious problems with this are time and reimbursement. Wouldn't it be nice if we could bill the price of the 5 or more office visits that we spend getting this history inadequately for the 1 home/child care center visit that would provide the critical information with relative ease?
We have been fortunate to have our former office nurse become employed by the local Visiting Nurse Association, so we are able to make referrals and have her be our eyes and ears without having to worry about billing and reimbursement. Other sources are the early intervention physical therapist, occupational therapist, and speech home therapist.
In the Challenging Case, there is clearly an interactive problem between parent and child, but let's not jump to blame the mom. A child who doesn't give a lot of feedback is harder to read, less satisfying to care for, and easier to leave in child care for long hours. It wasn't long ago that autism was blamed on the “refrigerator mother,” and I'd hate to see us jump into blaming working parents for the rise in PDD diagnoses.
Long hours in child care will exacerbate any vulnerability in a child, but quality of care is a big problem, too. Unless we find ways to train and pay child care providers enough to keep quality high, there won't be decent care available for any children. Perhaps it's because I live in California, where housing is so expensive and many parents work just to pay for housing, but I think many parents feel they have little choice.
Dr Martin T. Stein
During a 3-year-old's health-supervision visit, the pediatrician is faced with a concern by the mother that her son Max is stubborn (“not listening, stubborn, and not cooperative”) and waking frequently from sleep. An office observation of his behavior reveals that he is an active child who requires floor play by the pediatrician to be engaged in play. He remains mute during the visit (in contrast to being “much more talkative at home” and reciting dialogue heard on the video) and uses gestures (“pointing”) to request toys. Eye contact with the pediatrician is absent. A screening developmental history reveals normal expressive language milestone through 2 years of age, with delayed gross motor development; he walked at 18 months of age. Notably absent from the history is Max's social development, fine motor skills, infant temperament (“Tell me what Max was like in the first few months of life, during the rest of the first year, and at the time of his first birthday”). His mother reports limited interactive play with other children, with a preference to play alone even when home. Max is an only child in a middle-class family who spends a significant amount of time in child care each day as his working parents juggle their jobs and long commutes to maintain financial security.
Critical areas of history that may reveal important insights and a better understanding of Max are absent. How long has he preferred self-play rather than an interactive pattern of play? Can the parents describe a time when Max plays with 1 other child at home or at the park? Have Max's social interactions changed in the past year? A description of his infant temperament may be helpful. Assuming the historical accuracy of normal expressive language at 2 years old, it is important to establish whether his selective mutism started after age 2 years or was evident before that time. As suggested by Dr Goulden, a history from the person caring for Max at the home-based child care location would be useful—as an example of his social, motor, and language skills outside of the home and pediatrician's office. I have found that a simple request (“Tell me about Max at school—about his play, relations with other children and staff, and his behavior”) yields a descriptive narrative with useful clinical information. A recent example of a teacher narrative that I requested after observing unusual social interactions, intermittent eye contact, and a paucity of expressive language in a 3-year, 10-month-old boy is found in Table 1. In her own words, the teacher's observation provided important information in the assessment processes.
Ms Zweiback's commentary emphasized Max's atypical social interactions, preference for solitary play, repetitive play with parts of toys, and selective use of speech. She suggests that there is enough evidence to request a comprehensive assessment for ASD. Although I agree with the possibility of ASD with the information available, we need more data if we are to understand Max in the context of his family. Dr Wegner raised the possibility of an attachment disorder. When we understand the notion of attachment as an affectional connection with another person that endures over time,1 it should trigger a reminder to observe specifically the nature of the mother-child interactions, verbal and nonverbal communications. Is there a recently acquired dysfunction in attachment associated with the parents' long working schedules and mutual sleep deprivation? Does Max's temperament make him particularly vulnerable to his environmental challenges? A videotape of Max at home playing with his parents and another child might sort out these issues. A videotape of Max at his child care would also be helpful.
Many parents can be recruited to make these tapes as part of a diagnostic process. Meg Zweiback is a pediatric nurse practitioner. I suspect that her early clinical foundation in nursing informs her emphasis on anticipatory guidance and recognizing the opportunities for teachable moments during a diagnostic process. I am referring to the following comments:
The pediatrician can use this time to comment on Max's strengths . . . the ways in which his parents are doing a good job of caring for him.
The pediatrician may be able to give suggestions for home activities that build on Max's current abilities . . . eg, “floor time” play, limitations on television, and verbal interactions.
Questions about family support systems will help the pediatrician in guiding the family through the next stages.
Ms Zweiback also raised the issue of presenting “bad news” to parents.2 Pediatricians rely on their experience as a guide in this area. Recently, I monitored a remarkably effective session with our residents in role-playing giving “bad news” to a parent. One resident played the role of a parent (without knowledge of the diagnosis) while the other resident revealed the condition. Initially, we used conditions with which the residents had familiarity, including a febrile full-term newborn (appearing healthy to the parents) who needed a laboratory evaluation including a lumbar puncture and bladder catheterization, acute leukemia, detection of a cardiac murmur and the need for a cardiology referral, and cystic fibrosis. The role-playing was carried out in the presence of other residents, medical students and faculty. The discussions that followed each case reflected the educational value of the experience. Pediatricians in practice could participate in a similar exercise with their office colleagues or with other pediatricians in the community with supervision by a developmental-behavioral pediatrician or other mental health professional.
A word on screening and assessment: Dr Goulden wrote, “I would be cautious about ‘screening’ this child now, given the existence of symptoms suggesting disability, but screening tools are often used to give structure to informal observations of children.” Screening instruments that assess a child's development or behavior are formulated for use in asymptomatic children. The PEDS and CHAT referred to in Dr Goulden's commentary are screening instruments. They were not meant to be used in the child with symptoms that suggest developmental delay. However, when a primary care clinician uses a screening tool such as the CHAT in a child like Max, it is a clinically useful method “to give structure to informal observations of children.”