BACKGROUND:

Long delays between parents’ initial concerns about their children’s development and a subsequent autism spectrum disorder (ASD) diagnosis are common. Although discussions between parents and providers about early ASD concerns can be difficult, they are critical for initiating early, specialized services. The principles of shared decision-making can facilitate these discussions. This qualitative study was designed to gain insights from parents of young children with ASD about their experiences communicating with primary care providers with the goal of identifying strategies for improving conversations and decision-making regarding the early detection of ASD.

METHODS:

Three 2-hour focus groups were conducted with 23 parents of children with ASD <8 years old. Qualitative analysis employed an iterative and systematic approach to identify key themes related to parents’ experiences.

RESULTS:

Eight themes related to communication about early ASD concerns emerged: characteristics of the child that caused parental concerns, the response of others when the parent brought up concerns, how concerns were brought up to the parent by others, parental responses when others mentioned concerns, information seeking, barriers to and facilitators of acting on concerns, and recommendations to providers. Parent responses suggest the need for increased use of shared decision-making strategies and areas for process improvements.

CONCLUSIONS:

Primary care providers can play a key role in helping parents with ASD concerns make decisions about how to move forward and pursue appropriate referrals. Strategies include responding promptly to parental concerns, helping them weigh options, and monitoring the family’s progress as they navigate the service delivery system.

What’s Known on This Subject:

Challenges in parent-provider communication about early autism spectrum disorder (ASD) concerns can prevent young children from accessing appropriately specialized treatment at the age when it may be most effective. The process of shared decision-making can lead to more productive discussions and consensus building.

What This Study Adds:

This qualitative study provides insights from parents of young children regarding barriers to and facilitators of acting on their early concerns about ASD. Specific recommendations for shared decision-making strategies that may increase early access to ASD-specialized services are provided.

Although parents report becoming concerned about their children’s development at an average age of 17 to 19 months,1,2  the median age of an autism spectrum disorder (ASD) diagnosis in the United States is 52 months (or 74 months for Hispanic children).3,4  Parental concerns about their children’s development have been found to be valid5  as well as predictive of a later ASD diagnosis; 6,7  however, discussions about early ASD concerns between parents and primary care providers (PCPs) can be difficult for both parties. Parents may not raise concerns because they lack knowledge about early signs,8  are not sure how to articulate them, or fear that judgment will be passed on them or their children.9  In turn, PCPs may be reluctant to broach this topic because of limited familiarity with early signs of ASD, lack of comfort discussing it with families, and/or uncertainty about how to convey the information.1012 

A family-centered care framework may facilitate more productive provider-parent discussions about early signs of ASD. This framework promotes a respectful family-professional partnership and a shared decision-making process that capitalizes on the unique expertise and cultural values that PCPs and parents have to offer.13,14  Shared decision-making, through its key components, offers a systematic and inclusive way for PCPs to navigate complex discussions via the following: (1) supporting parent participation using active listening; (2) helping parents explore options and available, evidence-based treatments; (3) assessing parents’ values and preferences; (4) reaching a decision with the parents; and (5) evaluating and/or monitoring the decisions made.1519  Unfortunately, parents of children with ASD report less involvement in shared decision-making than the parents of children with other developmental disorders.20  As such, it seems critical to set the course for ongoing shared decision-making by starting with the earliest discussions about ASD concerns. The purpose of this qualitative study was to characterize parents’ experiences in recognizing and communicating about early ASD concerns and identify the barriers to and facilitators of acting on concerns with the broader goal of facilitating more open and transparent communication between PCPs and families to improve early detection.

The University of Washington Institutional Review Board approved this study, and all participating parents provided informed consent. Eligibility criteria were having a child with ASD <8 years old and fluency in English or Spanish. Families were recruited through study flyers distributed via e-mail blasts to ASD diagnostic and treatment centers, early intervention (EI) programs, and parent support groups. Twenty-three parents described their experiences with 29 children (79% boys; mean current age 5.3 years; age range 2–8 years). See Table 1 for parental demographic information.

Three separate 2-hour focus groups were held to learn about parental views and experiences regarding decision-making processes at different stages of service delivery. Two groups were conducted in English, and 1 was conducted in Spanish. The size of 2 groups (7–12 parents) was consistent with recommended procedures for thematic saturation21 ; however, 1 group (Spanish speaking) had only 4 participants because of last-minute scheduling conflicts. Sessions were audio recorded and anonymized during an automated, software-based transcription process. The focus group moderators used a systematic and comprehensive protocol that comprised (1) instructions for introducing the purpose, norms, and expectations to parents (eg, confidentiality) and (2) open-ended questions and follow-up probes for facilitating the discussion. Focus groups were designed to allow for synergistic discussion among parents. Parents received $100 for their time.

A brief questionnaire was used to collect demographic information. The interview guide probed for information about the emergence of early concerns about children’s development, the experience of hearing that the children might have ASD, communication with PCPs and EI providers about ASD concerns, the type of materials (content and format) that might facilitate communication and decision-making, and decisions about follow-up on recommendations or referrals (Table 2).

Focus group discussions were transcribed and uploaded to NVivo 12 (QSR International) for data management. The coding scheme was developed by using a rigorous, systematic, transparent, and iterative approach that employed several steps. First, the research team independently reviewed 1 initial transcript to identify recurring themes. Second, the researchers met as a group to develop a preliminary codebook that integrated the original themes conceptualized during the focus group protocol development (ie, deductive approach) as well as newer themes that emerged from initial review of the transcript (ie, inductive approach).22,23  Next, the research team collectively determined which themes to incorporate into the final codebook. Operational definitions and examples of each theme were documented, as were rules about when to use or not use each code. The coding scheme was applied to all of the data from the 3 focus groups to produce a descriptive analysis of each theme and was refined throughout the data analytic process.22  Thematic saturation was reached at the point at which no new insights were obtained, and no new codes were identified when the codebook was applied across all transcripts. Two coders coded all data, and interrater reliability was calculated for 67% of the transcripts. The coders met together on a weekly basis to discuss, clarify, verify, and compare themes; disagreements were discussed with the research team to attain consensus. Percentage of agreement was calculated on the basis of the number of words agreed on by the 2 coders within a given theme; average agreement was 94.5% across all the themes.

Eight themes emerged from the data and are summarized below. See Table 3 for themes and sample quotes.

Parents were typically the first to become concerned about their children’s development, with concerns emerging at an average age of 17.1 months. Although the behaviors prompting early concerns often represented core ASD deficits (eg, impaired social engagement and limited eye contact), multiple presentations were described, including delays in language or motor development, sensory-seeking behaviors (eg, spinning toys), and challenging behaviors (eg, severe tantrums with difficulty calming). One parent remarked, “…her speech is not progressing, like, there’s a lot of things that aren’t right; she was spinning a lot.” Some first-time parents described limited knowledge of developmental milestones, which prevented them from recognizing early signs.

Many parents who mentioned their concerns to their children’s PCPs felt that they were dismissed or not taken seriously because their PCPs recommended that they “wait and see” or suggested that they were “overly worried.” However, a few parents felt supported in their concerns in that they received prompt referrals and information about ASD from their PCPs. Parents who discussed concerns with other service providers, friends, or family members received similarly dismissive responses. One parent noted that “when I went back to our pediatrician, he [was], like, ‘Well, I didn’t think anything was wrong with her.’ I think at that point…he kind of wrote off me and my husband as being overanxious parents.” Some parents were told that the children did not have “classic tells,” were “too social for autism,” or were simply “shy” or “introverted,” whereas others ascribed the children’s behaviors to medical (eg, prematurity) or situational causes (eg, changing preschools).

Although parents were often the first to experience concerns, some parents were not concerned about ASD until others raised this possibility. Concerns were raised by PCPs, EI providers, family members, day care or preschool staff, or mothers of children attending the same preschool and were conveyed via e-mail, via phone, or in person. Some parents received informal notes that their children’s behaviors were not developmentally appropriate, whereas others received specific referrals for diagnostic evaluations or packets of resources. One parent mentioned, “[My son] went to day care, and the counselor at day care sent me an e-mail [that said], ‘Hey, let’s talk about…’ in a soft tone. And I found that really irritating, and I was defensive and [said], ‘Let’s not. Let’s let him develop at his own pace.’” Most parents reported that the message was delivered in a kind and gentle manner, whereas others noted that the delivery was poor and/or unwelcome (eg, mentioning concerns over e-mail or referring to an autism center without explaining autism).

Parents experienced a range of emotions when ASD concerns were mentioned. Some were completely surprised because they had not noticed any issues and their children had met developmental milestones. One parent reported, “We just thought he was unique.” Some parents were skeptical and resistant to the suggestion that their children had ASD. The label of autism generated fear and anxiety for some parents, with one reporting, “We were totally freaking out,” but others found calm or comfort in the idea that they may finally have a concrete explanation for their children’s difficulties. Despite initial hesitancy or negative emotions, most parents sought more information from their PCPs and EI providers or took action when they were given specific recommendations and/or referrals (eg, who to contact for diagnosis or treatment).

Some parents had limited knowledge about ASD other than its representation in the media (eg, the movie Rain Man), whereas others had exposure to ASD from family members or children of coworkers. Most parents gathered information using Google searches, visiting specific Web sites (eg, that of Autism Speaks), or checking out library books. One parent reported, “I went to the library and took out a gazillion books and just read and read. Then, the message I took from that was, ‘Act now and as much as possible.’” Overall, parents reported feeling overwhelmed by the amount of information to sort through, and some felt that the information painted a bleak picture of their children’s futures.

Parents cited numerous barriers to acting on their ASD concerns. Some parents ascribed delays in moving forward to their PCPs’ or EI providers’ dismissiveness and lack of support, failure to use ASD-specific screening tools, or lack of familiarity with the presentation of ASD in girls and underrepresented populations. One parent noted, “Why didn’t [my pediatrician] refer us or say something? We had to wait until the school district actually said something.” In addition, some parents reported that after their children were diagnosed with ASD, their EI providers disclosed that they were not allowed to mention ASD to parents, thus resulting in lost time. Unsupportive family members and parents’ own hesitancy about having their children being labeled and stigmatized (referred to by one parent as an “internal battle”) also were cited as barriers. Hispanic families reported that language barriers impeded communication with PCPs and EI providers as well as access to ASD-specific materials and services. In addition, a lack of familiarity with patients’ racial and/or ethnic backgrounds and cultural beliefs (eg, expectations regarding pointing) represented another barrier. Parents uniformly described the logistic constraints associated with the service delivery system as barriers, including long waitlists, high costs, and the need to travel long distances for diagnostic and other ASD-specialized services.

Parents were more likely to act on early concerns when they were aware of the red flags for ASD and when they received appropriate referrals, resources, and support from their PCPs and EI providers. In an effort to obtain needed referrals, some parents went to PCPs with “evidence” (eg, notes about child behavior) and resolved to be assertive (eg, “put my foot down”). Not surprisingly, living in communities with a greater availability of services and resources also acted as a facilitator. One parent stated, “If you have the money, you can kind of skip ahead of the lines,” referring to the long waitlists. Some parents noted that they were able to bypass long waitlists for diagnosis by participating in research projects offering evaluations or through personal connections or networking.

Parents expressed a desire that providers receive more training on the early signs of ASD, be more responsive to parental concerns, and be more willing to make referrals. They believed that PCPs should feel comfortable acknowledging that they are not ASD experts and referring families to appropriate specialists more readily. Improved care coordination and communication between PCPs and other providers, the availability of case managers to assist parents in identifying and coordinating services, and ongoing follow-up discussions also were recommended to help parents feel more supported and navigate the service delivery system more effectively. One parent commented, “Once you get your diagnosis, it would [have] been nice to have someone actually talk to you who could explain it.”

Several suggestions for information and written materials to facilitate communication and understanding were offered: (1) provide a clear, simple definition of ASD; (2) address and/or dispel some of the negative beliefs and stigma associated with ASD and provide a hopeful message about the long-term course; (3) explain the diagnostic process; and (4) provide descriptions of potential interventions that may be appropriate for the child. In addition to offering this information as early as possible, parents suggested that it be presented within the context of an in-person conversation that includes other key family members instead of relying exclusively on written documents. Parents also suggested that PCPs and EI providers use a culturally sensitive lens and spend time better understanding each family’s viewpoints and existing perceptions about ASD (eg, potential cultural stigma).

To our knowledge, this is the first qualitative study designed to learn about parents’ experiences communicating with providers about ASD concerns with the goal of identifying strategies for improving conversations and decision-making to improve early detection. Several themes emerged from the qualitative data: the characteristics of the child that caused parental concerns, the responses of others when the parent brought up concerns, how ASD concerns were brought up to the parent and how they responded, how parents sought information about ASD, the barriers to and facilitators of acting on their ASD concerns, and recommendations to PCPs and EI providers. Parents indicated several ways in which communication about concerns with PCPs was challenging and offered suggestions for process improvements that align with the core principles of family-centered care, particularly the shared decision-making approach (ie, seeking parent participation, exploring options for next steps, assessing parents’ values and preferences, and reaching, evaluating, and monitoring decisions).15,16,18  Given the time and logistic constraints associated with well-child visits, the shared decision-making steps and/or strategies described below may be implemented flexibly by PCPs and include scheduling a follow-up visit to allow for ample time to navigate the conversation.

Regardless of who first raises concerns, PCPs are in a key position to encourage, support, and maintain parent participation during the decision-making conversation. Active listening strategies are helpful for understanding a parent’s perspective about his or her child’s development with respect to the early signs of ASD and developing a shared understanding of what ASD represents. Although parents may have different levels of knowledge about ASD when concerns arise, many parents in this study identified early behaviors that are consistent with core ASD impairments (eg, poor eye contact and difficulties with social interactions). This finding suggests that incorporating concrete examples of early ASD signs into a simple overview of the disorder may serve as a springboard for “getting on the same page” with parents regarding their children’s development. Highlighting the facts that ASD occurs on a spectrum, wherein features can vary greatly from child to child, and that individuals with ASD have the potential to become productive members of society and live fulfilling lives may dispel some of the stereotypes commonly associated with ASD that may contribute to denial and hesitancy to act on concerns and prevent parents from becoming overwhelmed by the misinformation available through other sources (eg, Internet searches). Some PCPs may seek additional training and/or access resources regarding the early presentation of ASD given the rapid changes in this area of knowledge.

In discussing potential next steps or referrals, PCPs may help parents explore the potential benefits, harms, and challenges associated with different options, such as referrals for EI24  and diagnostic evaluations, per the American Academy of Pediatrics guidelines.25  Parents in this study, as well as others,26  were clear about wanting service referrals as early as possible rather than a “wait-and-see” approach. They also expressed a desire for information about the diagnostic process and potential interventions that may be appropriate for their children. Although PCPs may face challenges in keeping up with available ASD-specific services in their communities,12  periodic engagement with key stakeholders and/or organizations may provide the needed information. In light of the system-level barriers to services described by parents in the current study (eg, long waitlists for diagnostic evaluations), as well as in other studies,27,28  PCPs may want to prepare parents for what might be a long, obstacle-ridden road ahead.

Within the context of their discussions, it is critical that PCPs consider the parents’ values, priorities, and preferences. Parents indicated that provider dismissiveness contributed to delays in early detection and that they would have preferred that PCPs actively listen to and respect their viewpoints. They also indicated a desire for increased sensitivity to different cultural beliefs and values, including expectations and views regarding developmental milestones (eg, use of eye contact and acceptability of pointing), perspectives on stigma, and the importance of the extended family. PCPs may find it useful to ask open-ended questions about these areas when parents appear reticent to share their opinions.

Once potential next steps have been reviewed, PCPs may help parents reach a decision, set a goal, and then monitor their progress. Some parents may prefer that decision-making occur in the form of a discussion, whereas others may benefit from written lists of the pros and cons of different options. In the current study, most parents indicated that they were ready to make a decision and act fairly quickly once providers were responsive to their concerns. However, some parents will need more time. Offering follow-up appointments has benefits for both situations, whether it be to provide additional information or resources, engage other family members in the discussion, clarify misinformation obtained from the Internet, or reevaluate decisions. Once a decision is made, PCPs may wish to follow-up with parents regarding their progress toward implementing the decision and assist with barriers if possible. PCPs’ efforts to monitor progress may provide parents with the support they need to navigate the health care system and coordinate care for their children more efficiently.

The medical complexity and comorbidities associated with ASD require a comprehensive, coordinated, family-centered approach that is consistent with the medical home model. Shared decision-making is one of the foundational components of this model and is considered to be critical for meeting the specialty care needs of these children.19,29,30  The use of shared decision-making when discussing early ASD concerns may help establish the building blocks of a trusting relationship that will be essential for managing the long-term care of a child’s ASD-specific symptoms and other medical comorbidities.31,32  When engaged in shared decision-making with PCPs, parents of children with ASD report higher levels of satisfaction with the overall quality of their children’s health care as well as increased guidance regarding treatment options and controversial issues related to ASD.33  Conversely, the failure to employ shared decision-making strategies may not only leave parents feeling dissatisfied and unsupported but also may prevent them from seeking advice from their PCPs regarding the efficacy or safety of complementary and alternative treatments they may be considering.12 

There are several limitations of this study. First, the current sample was homogeneous with respect to socioeconomic factors because the majority of the participants were white, non-Hispanic mothers with a college education. Second, the majority of our sample consisted of parents who were the first to raise ASD concerns to their PCPs. As such, additional factors may come into play for parents who are less aware of ASD and/or developmental issues and parents from diverse, underrepresented backgrounds. Third, these results are unidirectional, reflecting only the experiences and perspectives of parents and not those of health care providers who engage with concerned parents. Future studies should examine the perspectives of other key stakeholders involved in the early detection of ASD.

The results of this study point to the importance of employing shared decision-making strategies within the context of parent-provider discussions about ASD concerns. Given the complex, multifaceted nature of this type of decision-making and the logistic constraints that exist for well-child visits, it is clear that the development and use of ASD-specific shared decision-making aids34,35  may assist both PCPs and parents in navigating the different aspects and increase efficiency. Using a shared decision-making approach and accompanying aids also may be helpful for EI providers given that they also have indicated uncertainty about how to communicate with parents about ASD concerns.36,37  The development of such aids is currently underway and will include materials that PCPs and EI providers can use with parents to describe the early features and heterogeneity of ASD and to help them make decisions about possible next steps with consideration of each family’s priorities, needs, and values.

Dr Locke designed the focus group protocol, coconducted focus groups, coordinated and supervised data collection and analysis, and drafted the initial manuscript; Dr Ibanez conceptualized and designed the study, conducted focus groups, and participated in writing and editing the manuscript; Dr Stone conceptualized and designed the study and participated in the writing, editing, and final review of the manuscript; Ms Posner and Ms Frederick coded the data, conducted initial data analysis, and participated in drafting the manuscript; Ms Carpentier recruited the sample, collected data, and reviewed the manuscript; and all authors contributed to the writing of the manuscript, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.

FUNDING: Funded by the Health Resources Services Administration (R41MC31076 to Dr Stone) as well as the National Institute of Mental Health (K01MH100199 to Dr Locke). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, Department of Health and Human Services, or US Government.

ASD

autism spectrum disorder

EI

early intervention

PCP

primary care provider

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.