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Commentary
April 2007

Revisiting Parental Concerns in the Age of Autism Spectrum DisordersThe Need to Help Parents in the Face of Uncertainty

Arch Pediatr Adolesc Med. 2007;161(4):406-408. doi:10.1001/archpedi.161.4.406

More than 30 years ago, parental concerns about their children's development focused on delayed diagnosis of physical disabilities, such as hearing impairment and cerebral palsy. Fortunately, with better training and diagnostic tools, children with these and other physical disorders are now identified early. The next frontier of pediatric developmental morbidity includes more subtle problems of young children, especially socioemotional and communication disorders like autism spectrum disorders (ASDs). Appreciating parents' concerns about these disorders and providing assistance is more complex and challenges the primary care clinician both to screen effectively and to offer ongoing insight and support through the diagnostic process and beyond.

This challenge is, in part, spurred by dramatic progress in our understanding of ASDs during the past 10 years, leading to improved diagnosis and treatment. Autism spectrum disorder has been transformed in the public and professional eye from a rare, stigmatized disorder to one that appears on the covers of national magazines and in public service announcements. At the same time that the prevalence has skyrocketed to an often-quoted rate of 1 of every 166 children, the age of initial diagnosis has dropped,1 and the range of children receiving the diagnosis has broadened dramatically. With changes in diagnostic classification, what was once thought to be only a severe, rare disability in school-aged children now includes more subtle social communication deficits identified in young children. Treatment studies and expert consensus tell us that early, intensive intervention influences outcomes in many children, making accurate diagnosis a critical matter for both clinicians and families.2

Information about ASDs available to families and clinicians is constantly expanding. Screening recommendations for primary care providers from the American Academy of Pediatrics and the Society for Child Neurology, including telltale “red flags” necessitating further evaluation, have been available since 2000.3,4 Awareness campaigns targeting both parents and clinicians from the Center for Disease Control and Prevention, Medical Homes Initiative, First Signs, Autism Speaks, and other public and private organizations are widely distributed, and parent-led advocacy groups are gaining greater visibility and influence. The American Academy of Pediatrics' new pamphlet for parents about social communication in 1-year-old children (“Is Your One Year Old Communicating with You?”)5 encourages pediatricians and parents to consider signs of autism far earlier than many would have thought possible only 10 years ago. The newest recommendations from the American Academy of Pediatrics on developmental surveillance particularly target the 18-month visit, in the hopes of detecting social and communication disorders earlier across the population.6 The international proliferation of longitudinal studies of infant siblings of children with autism is likely to further drop the expected age of diagnosis, as research findings influence clinical practice. Time will tell whether the goal of diagnosis in infancy can be realized and whether it does indeed significantly improve functioning in affected children.

While there is much hope and anticipation in the ASD professional and parent communities that increased public awareness, research, and resources will lead to breakthroughs in diagnosis and treatment, currently many barriers to early and appropriate diagnosis and treatment remain. Though a recent American Academy of Pediatrics policy statement recommends routine developmental surveillance and targeted screening at well-child visits, studies show that many pediatricians do not regularly use standardized developmental screening tools.7 If general developmental screening is hard to implement, screening that targets ASDs specifically will be harder still. Distinguishing between cognitive or language delays and the social communication delays of ASD may be subtle and not easily recognized. Until researchers discover reliable genetic or other biomarkers, the diagnosis of ASD will remain a clinical, and thus imperfect, determination. Parents, however, can be the best resource to identify young children whose development and behavior does not appear typical. Parents who bring concerns to a pediatrician have been shown to be the primary cause of identification of many medical and behavioral conditions diagnosed at health supervision visits.8 The need for parental input, particularly regarding the diagnosis of ASDs, has been illustrated in multiple books for and by parents of children with ASDs.9,10 These books and other media are likely to improve parents' knowledge and observational skills. This increased awareness should improve identification of aberrations in typical development and behavior to advance the cause of early identification.

In this time of ever-expanding knowledge about and intense focus on autism, how should pediatricians respond to parental concerns? Pediatricians are accustomed to reassuring anxious parents that there is tremendous variation in normal development. Parents want to believe this reassurance from an authority on their child's health and development. It is not unusual, however, to hear parents of a child who is later identified with a problem complain that when they expressed concerns about their child's development to the pediatrician, they were told, “Don't worry, he's a boy. He’ll talk when he's ready.” Though pediatricians may not always have the answers, they will not go wrong if they listen to parents, acknowledge their concerns, and avoid reflexively jumping to reassuring phrases like “Let's wait and see” or “He’ll grow out of it.” The message “wait and see” is understandably a battle cry to parents who worry that their children have true delays. Children with atypical social/emotional development as toddlers may ultimately be diagnosed with ASD, a language disorder, cognitive delay, sensory integration dysfunction, attention-deficit/hyperactivity disorder, or merely a challenging temperament by the time they are school aged. In the face of parental concern, the critical issue for pediatricians is to distinguish children with a problem requiring an immediate, intensive intervention from one for whom “watchful waiting” is appropriate.

From the parents' point of view, however, what may really matter is what to do now. Intervention starts in response to parental concerns; pediatricians should acknowledge and address parents with concrete advice for how to promote a child's development, whether or not the child has a specific diagnosis. Parents of children with developmental delays often request guidance on how to interact more effectively with their children. The pediatrician's goal should be to place the child's behaviors in a clinical framework and to offer strategies that work within this framework. In the case of a child with a difficult temperament, such as being slow to warm up or having a negative mood or impulsive/emotional lability, this may begin with discussion of the concept of temperament, administration of a temperament scale to the parent and child, and discussion of “goodness of fit.”11 For the child with socialization delays, this may involve referral to Early Intervention (federally mandated service for children with disabilities) or a play group, or introducing the parents to Greenspan and Wieder’s12 concept of “floortime” and “closing circles of communication” with the child so that they can begin this intervention at home. Parents of children whose language acquisition seems questionable for their age can be advised to use picture books to name objects, tell stories, point and name common objects in the home, and provide an ongoing description of their activities. Picture books also provide a vehicle for parents to support joint attention. With close clinical follow-up, how the child responds to these interventions may be informative diagnostically when clinical presentation is initially unclear. While suggesting these activities, clinicians who recognize delays in behavior, socialization, and communication need to raise the possibility of an ASD and make appropriate referrals for developmental, speech and language, and audiological assessments. Encouraging parents to become their child's primary therapist is not appropriate. Parents need tools so they can interact with, understand, and advocate for their child, but the onus for appropriate referral, diagnosis, and treatment lies with the pediatric provider.

Clinicians are understandably hesitant to raise the specter of autism prematurely, especially if they feel that identifying the disorder in early childhood is outside their clinical expertise. Thus referral, not diagnosis, is the appropriate step for most primary care clinicians. Even children who have been referred at a young age may need to be reevaluated at an older age when behaviors are more likely to lead to a clear diagnosis. Open and honest discussion of the clinician's concerns and thought processes is important and valued by parents. The pediatric provider's willingness to share that uncertainty with families is critically important to preserve and strengthen the relationship between family and clinician. This trust, in turn, will be essential in the future if a child is given a diagnosis of ASD. Unnecessary worrying of parents with overaggressive identification of variations of normal behavior as signs of pathology should always be avoided. On balance, however, young children with developmental delays easily mistaken for autism, such as cognitive or language disorders, are unlikely to be harmed by early evaluation and therapy for these delays. Pediatricians should never delay prompt referrals for developmental evaluations and services once concerns arise, whether or not ASD is the most likely diagnosis.

SPECIAL CASE FOR UNDERSERVED POPULATIONS

Not surprisingly, there are disparities in care for children with developmental problems and ASD. Disparities in the age of diagnosis based on socioeconomic factors have been demonstrated, with poorer children from ethnic minorities or rural areas being diagnosed later.13,14 A lag between onset of symptoms and diagnosis represents missed opportunities for children to benefit from intensive early intervention. It also represents years when families suffered with a child whose behaviors they did not understand and did not have necessary help to manage.

In our experience, the children most often referred for diagnosis at the age of 4 years or older are children of poor, immigrant, and/or single-parent families with few resources. Sometimes the delays in referral are because of the parents' lack of recognition of a problem or lack of follow-through with a referral to Early Intervention or to a specialist. Lack of continuity in primary care sometimes appears to be the culprit when no one provider observes the child over time, either because of clinic practice, because the family switches from one health center to another, or because of staff turnover at a single health center.14,15 In this scenario, subtle signs of atypical development can be missed. Clinicians may assume that screening was done at a previous visit by a different provider, or that a federally sponsored Head Start preschool or a child care center would have identified any problems. It takes a parent with self-confidence, knowledge of normal development, and an active desire to seek diagnosis or treatment to reject the pediatrician's reassurance, to demand a referral to a specialist, or to even change physicians to facilitate a referral. Parents who are poor, less well educated, or do not speak English are often less likely to advocate effectively and quickly for their children when they disagree with reassurances provided by their pediatrician. For many disadvantaged families, autism is not yet a household word. Thus, it is critical that pediatricians take on an even greater role with these families to recognize and respond quickly and decisively to the early signs of autism, not attributing delays to bilingualism or cultural differences.

CONCLUSIONS

When to worry, when to share worry with parents, and when to refer children is not always clear. Limited treatment resources and long waiting lists for referrals to specialists further complicate the process. However, whether the clinician refers the child to a specialist or decides that watchful waiting is more appropriate, the following are important clinical strategies to help the family:

  1. Acknowledge, do not dismiss, parents' concerns.

  2. Provide simple parenting strategies to enhance parental understanding of the child and to aid in creating positive interactions.

  3. If watchful waiting is the plan, give parents information about what is to be watched and during what period of time. Depending on the parents and their child, 3 to 6 months may be too long.

  4. See parents through the process. Acknowledging the uncertainty can strengthen your relationship with the family and support future interactions, regardless of what the eventual diagnosis may be.

As a field, we must continue to push the boundaries in our understanding of ASDs, using our best genotypic and phenotypic tools. For parents and children who are struggling with this issue everyday, help and answers cannot wait.

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Article Information

Correspondence: Dr Caronna, Boston Medical Center, Division of Developmental and Behavioral Pediatrics, Maternity 5, 91 E Concord St, Boston, MA 02118 (elizabeth.caronna@bmc.org).

Author Contributions:Study concept and design: Caronna, Augustyn, and Zuckerman. Drafting of the manuscript: Caronna, Augustyn, and Zuckerman. Critical revision of the manuscript for important intellectual content: Caronna, Augustyn, and Zuckerman. Administrative, technical, and material support: Zuckerman. Study supervision: Augustyn and Zuckerman.

Financial Disclosure: None reported.

Funding/Support: This work is supported in part by a Maternal and Child Health Bureau training grant and the Harris Foundation.

Acknowledgment: We thank Nancy Wiseman, BS, for her helpful comments.

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