Culturally Responsive Communication with Families in which a Child has Autism:
A Toolkit for Health Care Providers
This toolkit for Culturally Responsive Communication was created by the South Asian Autism Awareness Centre (SAAAC) Project Team with funding from Autism Ontario and AIDE Canada.
SAAAC Project Team:
- Arjun (AJ) Balasingham, Concordia University, Kinark Child and Family Services (Member of the Board of Directors)
- Dr. Shivajan Sivapalan, South Asian Autism Awareness Centre (SAAAC)
The SAAAC Project Team would also like to thank Dr. Lauren Tristani and Dr. David Nicholas for their editorial review of this toolkit.
Citation Information
Suggested Citation: Balasingham, AJ and Sivapalan, S. (2021). Culturally Responsive Communication with Families in which a Child has Autism: A Toolkit for Health Care. South Asian Autism Awareness Centre (SAAAC). Toronto, ON.
Culturally Responsive Communication with Families in which a Child has Autism:
A Toolkit for Health Care Providers
Autism, or autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by challenges with social skills, nonverbal communication, repetitive behaviours, restricted interests, and sensory preferences or aversions.[1] The diagnostic criteria are described in the Diagnostic and Statistical Manual for Mental Disorders (DSM-5). Early intervention can improve learning, communication, and social skills, as well as underlying brain development. Interventions are variably based on evidence. Many children diagnosed with affected by autism also benefit from other interventions such as speech-language therapy and occupational therapy; again, early intervention is critical for long-term positive effects on symptoms and later skills.
Recent data from the Centers for Disease Control and Prevention indicates that the prevalence of autism spectrum disorders (ASD) is one in every 59 children aged eight years.[2] Although differences in the prevalence by race and ethnicity have declined in recent years, the disparities in children evaluated by 36 months still exist and favor children who are demographically classified as “white”. Data released in a 2018 report by the Public Health Agency of Canada generally corroborate the prevalence findings from the United States.[3] Health, education, and social services data collected from seven participating provincial and territorial governments (Newfoundland and Labrador, Nova Scotia, Prince Edward Island, New Brunswick, Quebec, British Columbia, and the Yukon), representing 40% of children and youth in Canada, estimate that one in 66 children 5-17 years of age has been diagnosed with ASD. Furthermore, these data indicate that diagnosis among males is four times higher as compared to females. Unfortunately, data on ethnicity were not reported in this study. Notably, however, only 56% of children with ASD were diagnosed by six years of age.
In the Canadian Autism Spectrum Disorders Alliance (CASDA) National Needs Assessment Survey published in 2014, one of the priorities identified was targeted outreach to linguistically and culturally diverse communities in order to facilitate understanding of their service needs and improve their access to service.[4] Additional studies conducted in Canada have focused on identifying social determinants of health, such as neighborhood socioeconomic status,when assessing the prevalence of ASD.[5] Importantly, in this study, high levels of structural disadvantage, for example inequitable quality of resources and quality of neighbourhood public facilities, were found to be associated with poor developmental outcomes in children. In addition to this structural disadvantage, social norms and values defined by the dominant culture were found to have an impact on the development of children. Importantly, among certain immigrant families, there may be factors that decrease parental willingness to accept a developmental issue in their child, such as fear of their spouse leaving them or negative impact on the marriage potential of other family members. These cultural issues need to be considered by HCPs when they interact with parents and caregivers from different cultural backgrounds in order to improve dialogue and increase the likelihood of acceptance of an ASD diagnosis for the child.
What do we know about ASD:
What can Healthcare Professionals and Service Providers do to Improve Gaps in Care for Individuals and Families?
Metacognitive Cultural Intelligence (CQ)
According to Davis and Wright, “CQ is expressed as the ability to recognize the shared beliefs, values, attitudes and behaviours of a group of people and, most importantly, to effectively apply this knowledge toward a specific goal”.[6] In the healthcare setting, considerations for cultural, linguistic, religious, sex and gender, and racial/ethnic characteristics can improve healthcare delivery. The specific goal in our case is the early diagnosis of ASD – a goal that requires the Health Care Professional (HCP) have high CQ in order to engage in culturally-responsive communication with caregivers.
But how does one develop high CQ? As Davis and Wright have noted, CQ is based on the premise that the concept of “culture” can be defined and understood, which is a tall order in itself.[7] Wright defines culture as “the whole of any society’s knowledge, beliefs, and practices…”, while Anthropologist, Christoph Brumann, suggests that “culture” be “retained as a convenient term” for labeling the “clusters of common concepts, emotions, and practices that arise when people interact regularly”.[8] The difficulty in defining culture with any sort of theoretical precision has had minimal impact on political and public discourse in many Western societies, including Canada, where Non-Western cultures are often caricaturized as backwards, patriarchal, oppressive, unhealthy, and ill-informed.[9] With this in mind, Metacognitive CQ, defined as the “capability for consciousness and awareness during intercultural interactions”, is beneficial during the process of the diagnosis of ASD.[10] Hence, a key component of diagnosis is to create a safe space to share information and listen to families without judgment, in order to understand their cultural practices and beliefs.
Cultural and social norms are the “rules or expectations of behaviour” which are usually “unspoken”, and offer social standards about the appropriateness of one’s behaviour.[11] According to Ng, Dyne and Ang, “those with high metacognitive CQ are consciously mindful of cultural preferences and norms - before and during interactions”.
Culture influences the manner in which families, HCPs, and society comprehend and treat developmental disorders. Particularly with ASD and the behavioral criteria required for diagnosis, the influence of cultural norms on subjective considerations for behaviour norms can present a disconnect between HCPs and parents.[12] Additionally, management or treatment strategies will also be biased towards cultural beliefs. Once HCPs have a better understanding of the families’ views and preferences, strategies and management can be tailored to increase the probability of acceptance of the diagnosis and adherence to management strategies.
How Can HCPs Engage in Culturally-Responsive Communication?
This toolkit provides evidence-based information to improve the ability of HCPs to engage in effective and culturally-responsive communication with caregivers to improve dialogue which:
1. Recognizes the role of cultural norms when assessing for ASD,
2. Addresses stigma related to ASD, and
3. Understands/identifies potential disparities in accessing management options
The Role of Cultural Norms
Behaviour plays a role in the assessment and diagnosis of ASD. The influence of cultural norms on subjective considerations for behaviour norms can present a disconnect between HCPs and parents.[13]A key barrier that occurs during the screening process pertains to cultural context and its impact on parents’ interpretations of their child’s behaviour. Standard indicators of ASD may not elicit concern among parents at an early age across different cultures. A classic example is eye contact. In most Westernized cultures, children are taught that eye contact is important for meaningful communication; in contrast, other cultures teach children that direct eye contact is disrespectful.[14] Similarly, the use of index finger pointing to share interests is not a common practice in some Asian cultures.[15]
More broadly, different cultural practices and beliefs about child development may affect the age of ASD detection. Certain cultures may encourage i) independence of children at later ages than Western cultures; ii) family interactions rather than playing with toys; iii) children being quieter or speaking when asked to. Therefore, HCPs require an appreciation of cultural norms in order to better understand the expectations of child development before assessing for ASD. Additionally, management or treatment strategies, ranging from developmental or psychosocial intervention, psychotherapy, medication, vitamin/mineral supplements or diet, may be biased towards cultural beliefs, although not all are evidence-based. There are situations where a Cultural Broker/Liaison or Community Health Partner, who has an established relationship with the family, may be utilized to improve understanding about ASD and management or treatment options.
Mini-case Scenario
A mother brings her son to their family doctor’s office for his routine 18 month Well Baby check-up. The mother has newly immigrated to Canada from Vietnam and a community health worker is accompanying her to help her navigate the services she and her son are eligible for. The mother completed the routine developmental milestone checklists in the waiting room which include the LookSee checklist for 18 months and the Modified Checklist for Autism in Toddlers Revised. On reviewing the checklists, the doctor notes a few concerns, around the lack of eye contact and not pointing to show interest. The family doctor now suspects that this child may have some of the early warning signs of a developmental delay and possibly autism. On examination, the doctor notes that the child does not make good eye contact but instead looks down. However, the child does follow simple instructions and can identify animals in a book when asked to. The doctor speaks to the mother and asks her if she has any concerns about the child’s development, which she does not. The mother responds in short answers with minimal eye contact.
Reflection
What concerns come to your mind about the child’s development?
What concerns do you hear from the caregivers about the child’s development?
How would you approach asking additional questions to gain a better understanding of symptoms?
Is the child’s lack of eye contact due to developmental delay or a cultural norm?
Is there another way to assess for eye contact?
Does the parent also avoid eye contact?
How is the parent’s interaction with the community health worker? Does the parent avoid eye contact with them as well?
Is there any information the doctor can gather from the Community Health Worker to better assess the child?
Post Reflection:
After reflecting and considering the above questions, the doctor decides to approach the community health worker regarding his concerns and inquire if the mother fully understood the checklist questions. The community health worker provides some valuable information, specifically mentioning that direct eye contact is considered a sign of disrespect in the mother’s culture and this is even more so when families are speaking to doctors. So, the doctor decides to ask the mother to help with assessing her son. The doctor tells the mother that having the parent interact with the child provides a better picture of the child’s capabilities. With the mother helping in the assessment, the doctor is able to notice that the child does have good eye contact and is able to share his interests with his mother.
Culturally-Responsiveness Communication (Do’s and Don’ts)
In the above scenario, the doctor first allowed time to self-reflect on the child’s case. The doctor did not hastily jump to a conclusion that the child has a delay. Instead, the doctor spoke to the community health worker. The worker was able to provide more cultural context which helped the doctor more accurately screen the child. By involving the mother, it helped the mother feel more welcomed and listened to. Additionally, in the event that the same concerns were still noted with the mother’s interaction with the child, the conversation with the mother could then be based on that interaction.
Addressing Stigma
A recently published systematic literature review revealed that parents of children with autism experience stigma by association (i.e. courtesy stigma). Also, internalized stigma occurs.[16] In particular, immigrant mothers struggle to acknowledge a diagnosis of ASD in their younger children in an attempt to preserve hope for the child’s future.[17] Additionally, some may worry about their own future – if they are blamed for the child’s diagnosis, or the future of their family members’ marriage prospects – if siblings are unwed. There is a clear need to alleviate stigma faced by caregivers. Caregiver perceptions of autism affect how they present their children to others. A common term used by HCPs can be, “problem” (i.e., what “problem” does your child have). This notion may frame the conversation negatively from the perspective of the parent.[18]
Research has identified predictive factors that may reduce stigma associated with autism, which include more knowledge about autism, quality of contact with autistic people, openness to experience, and reduced acceptance of inequality.[19] It is important for HCPs to be more aware of the impact of stigma and address stigma, thereby improving caregiver receptivity to conversations on screening, diagnosis, management and support. Additionally, the use of a Cultural Broker/Liaison or Community Health Partner who has an established relationship with the family may be utilized to improve understanding about ASD and management options.
Mini-case Scenario
A mother brings her 4-year-old daughter to her developmental pediatrician for a follow-up visit. She has been dreading this visit and almost did not attend the appointment. At the last visit, the pediatrician had performed a play-based assessment with her daughter and had identified some concerns around her daughter’s development. The pediatrician had mentioned the term, “autism”. The mother did not know what autism means. The mother is from Sri Lanka and the equivalent word for it in her language, has a very negative connotation. She googled “autism” and what she found online was overwhelming. She tried to speak to her mother who brought up worries around how their family will be viewed in the community. As the father of the 4-year-old works during the day, the child’s mother has been the only one attending the appointments. She has been concerned about mentioning anything to her husband because she is worried that he will blame her and possibly leave her, thereby negatively impacting her reputation and that of her family.
During the follow-up visit, the developmental pediatrician informs the mother that her daughter has autism. The pediatrician goes on to tell her that her daughter will require support throughout her life, help in communication, and assistance in managing her behaviours. After some discussion around what the diagnosis implies and what it means for school, the pediatrician hands the mother a list of resources and informs her that their social worker will be in touch with her in a few weeks. The mother is fairly quiet during the discussion and only asks if her daughter will be able to attend university in the future. The pediatrician lets the mother know that it is difficult to say at this time.
The pediatrician then hands the mother a set of bloodwork requisitions for her daughter. The pediatrician explains the reasoning for the bloodwork. The pediatrician asks the mother if she has any more questions to which the mother indicates none. The pediatrician then suggests a follow-up appointment with the mother and daughter in 3-6 months.
Reflection
What concerns come to your mind?
What concerns do you hear from the family caregivers?
How can you bridge the concerns/fears?
How could the pediatrician help facilitate a more open conversation with the mother?
Has the mother ever heard the term ‘autism’, and if so, what does it mean to her?
Would it have been beneficial for the pediatrician to ask the mother what autism means to her and what it implies?
Would a sooner follow-up appointment be useful to ensure that the mother’s concerns are more adequately addressed?
Post-Reflection:
After self-reflection, the pediatrician contacts a community agency that works with the Sri Lankan community. The pediatrician is able to gain some valuable information about stigma and barriers families face when it comes to ASD. The pediatrician decides to contact the mother and asks her to come in for a follow-up. The pediatrician also asks the mother if she would feel more comfortable bringing a family member or her husband with her. The mother is appreciative of the offer and asks if she can bring her mother.
At the visit, the pediatrician asks the mother how she has been coping since the last visit and how her daughter is doing. The pediatrician also asks the mother if she has ever heard the term ‘autism’ and if so, what it means to her. The mother takes this opportunity to speak about what she has heard from family and what her experience was in Sri Lanka in regards to children with ASD. She starts to cry and expresses how she is worried that everyone will blame her for her child’s diagnosis. The pediatrician takes time to reassure her that although the cause of ASD is still not fully understood, it is not her fault. The pediatrician also explains to the mother that the situation for a child with ASD here may look different due to the resources available in Canada. There are supports in place to help her child reach her full potential and since her daughter is fairly young, the outcomes – with these supports – will be even better. The mother feels reassured. The mother also asks that if the bloodwork comes back normal, does that mean her daughter does not have ASD. The pediatrician explains that the bloodwork is not checking for autism but other genetic markers. The pediatrician then asks the mother how her husband is handling the news. The mother mentions that she has not told her husband yet. The pediatrician takes the time to let the mother know that it is okay and probes into why she did not share this information. She mentions her fears that he might leave her. The pediatrician offers to have a call with both her and her husband to better explain the situation. The mother’s mood brightens with that, and she states that it would mean a lot to her husband to hear it from a doctor. The pediatrician takes the time to also ask the grandmother if she has any questions, and to answer her questions.
Culturally-Responsiveness Communication (Do’s and Don’ts)
Understanding stigma and barriers ahead of time can help facilitate an easier conversation with families, especially when relaying a diagnosis. This can help better frame conversations around next steps, the benefits of early intervention, and ways to help the child reach their full potential. Overwhelming families right at the beginning, with all the challenges that they may be facing, can cause the family to shut down and not want to engage. In some cases, this could cause the family to not seek further supports.
In some cases, giving strategies to caregivers about how to relay information to extended family may be useful. Contextualizing this based on their preconceptions of ASD, specifically in relation to experiences in their home country or cultural beliefs, can help families better communicate the diagnosis to the extended family. Also, in certain cultures, having a doctor relay the information to spouses can be crucial in ensuring that everyone is on the same page.
Further, allowing caregivers time to process information is valuable. In most cases, the day the caregiver receives a diagnosis can be quite overwhelming and they may not have any questions in that moment. Planning a follow-up appointment shortly after can help solidify the therapeutic relationship as well as answer any questions that the family has.
Disparities in Access to Healthcare
A key factor associated with culturally diverse communities is inequality in their ability to access quality healthcare and other services, directly or indirectly.[20] Awareness of these inequalities, such as language barriers, low income, transportation limitations, and reduced social networks, are important in helping HCPs better understand potential barriers faced by families in accessing suggested therapies, as well as in identifying helpful strategies for caregivers.iv Ideally, all evidence-based management strategies should be offered and accessible; however, presenting a plethora of services to caregivers that may seem insurmountable to access, may decrease their motivation to explore any management approach.
Case Scenario
A father and mother arrive with their 3-year-old son for an appointment with his pediatrician. They arrive 30 minutes late for their appointment. The pediatrician is still able to see them but has limited time due to the family arriving late. As he is finishing up with another patient, he asks the family to fill out a questionnaire and checklist regarding their son’s development.
The staff asks the family if they need any help filling out the forms but the family says they are fine. After 5 minutes, the family is called into the pediatrician’s office. The pediatrician welcomes them and asks, “What brings you in today?” The family is unsure how to respond and noticing that, the pediatrician asks “Is there a problem your son has?”
The father responds by stating that there is no problem, but their son is not speaking yet. The father notes that he is not concerned, but the child’s daycare staff are. He also states that he (the father) started speaking at the age of 5, so his son will probably do the same. The pediatrician reviews the questionnaire and form that the parents filled out and noted that some of the questions were not answered. On reviewing the developmental checklist, the pediatrician observes that no concerns are indicated. However, on examination, the pediatrician notes that the child is stimming in the examination room and mouthing some of the toys that were placed on the floor. The pediatrician calls the child’s name, but with no response. The pediatrician is now concerned that the child may have a developmental delay and more specifically, autism. However, the pediatrician can sense that the parents seem very anxious. The pediatrician also notes that the mother is not saying much, and instead the husband is responding to all the questions.
Reflection
What concerns come to your mind?
What concerns do you hear from the caregivers?
How could you bridge the concerns?
Could the pediatrician have greeted the family in a different manner?
What may be a reasonfor the husband responding to all the questions?
Is there a language barrier?
Is it worth asking why the family was late?
Did the parents have any concerns in regards to their son?
Post-Reflection
After self-reflection, the pediatrician decides to approach the family slightly differently. The pediatrician asks the family if they had difficulty finding the clinic, noting that they live quite a distance away from the clinic. The father responds stating that they would normally drive to the clinic, but due to the cost of parking, they decided to come via public transit. The pediatrician states that for future appointments, there are parking passes given to patients. The father seems to appreciate that.
The pediatrician then asks the father “who spends most of the day with their son?”. The father mentions that it is his wife because he works multiple jobs. He also notes that he had to take time off work to come to this appointment. The pediatrician thanks the father for doing so. He asks the father if there are times that work better for him, so that follow-up appointments can be more convenient for the family.
The pediatrician then asks the father if his wife has noted any concerns while she spends time with her son at home. The father mentions that his wife feels more comfortable relaying information through him. The pediatrician also asks the father for more details regarding his developmental history and specifically around when he started to speak. Upon more detailed questioning, the father explained that he started speaking in conversations at the age of 5. However, he did say his first word when he was close to 1 year of age. The pediatrician explained that he will need to have another appointment with the child to further assess his development. He will try and schedule it so that it works with the parents’ schedule. He also takes the time to explain the benefits of early identification and intervention in autism. The parents leave reassured.
Culturally-Responsive Communication (Do’s and Don’ts)
In the above scenario, after self-reflection, the pediatrician was able to identify the barriers that this family faces and provide some targeted solutions. This helped the family feel listened to and understood. The pediatrician also clarified what “speaking” meant to the family as compared to the difference between imitating speech sounds/saying words and using simple phrases. By taking the time to explain the next steps to the family and addressing the barriers that the family is facing, the pediatrician has improved the chances of this family continuing down the pathway of being engaged and accessing services.
Summary
By focusing on the aforementioned key areas, HCPs can engage in culturally-responsive communication with family caregivers in regards to the screening, diagnosis, and a treatment plans for children with ASD.
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