Autism spectrum disorders (ASD)

Although the general characteristics of autism appear to be universal across cultures (Ametepee & Chitiyo, 2009; Papageorgiou, Georgiades, & Mavreas, 2008; Wakabayashi et al., 2007), parental recognition of and concern about the symptoms are not consistent. The three primary diagnostic characteristics of autism—social interaction, communication, and restricted behavioral repertoire—may be interpreted through a cultural lens that can lead to under-, over-, or mis-diagnosis (Dyches, Wilder, & Obiakor, 2001).

Formal and informal assessments of basic interpersonal communication skills (BICS) and cognitive academic language proficiency (CALP) are critical for CALD children being tested for ASD eligibility, including for children who are non-verbal. Under ideal circumstances, a student learning English as a second language could acquire BICS within 6 months to 2 years, whereas CALP takes 5–9 years to develop, depending on age and other factors. However, developmental trajectories may differ for students with ASD. For example, CALD students with mild ASD may develop CALP at a much faster rate than BICS; students with autism who also have intellectual disabilities may develop both BICS and CALP at slow rates; and some CALD students who have ASDs may remain in the silent period for much longer than typically developing CALD students (2–6 months) (Dyches, 2011).

Clinicians need to be cautious when viewing test items through a cultural lens. For example, several items on the Modified Checklist for Autism in Toddlers (M-CHAT) may not necessarily be autism “red flags” because of cultural considerations. Three items dealing with pointing (Does a child point to ask for or to indicate interest in something? Does a child look at something the parent points to?) may not be relevant to those from cultures in which pointing (Chinese, Korean, Vietnamese, Thai etc) is rarely used because it is considered rude. Another item that asks about a child’s eye contact may not be valued by those who consider children making eye contact with adults as rude, threatening, or disrespectful. The meaning CALD parents attribute to autistic symptoms can differ greatly (Dumont-Mathieu & Fein, 2005; Zhang, Wheeler, & Richey, 2006), and the failure of CALD parents to identify these behaviours as problems may delay or otherwise affect the identification of the child as at risk of having ASD (Dyches, 2011).

Similarly, many instruments include items that require caution during administration and interpretation. Along with items regarding pointing and eye contact, clinicians should consider cultural differences in the use of sarcasm, seeking attention from adults, use of physical touch, use of voice intonation and inflection, control of the direction and length of conversations, use of personal space, and use of gestures, among other culturally based communicative interactions. Clinicians are encouraged to probe these culturally based differences to differentiate between cultural expectations and ASD symptoms. However, if the child has never observed parents pointing at an object to express interest, it is not likely that pointing will be in the child’s repertoire, regardless of whether an ASD exists or not. In such cases, clinicians need to conduct a thorough examination across many scenarios (Dyches, 2011).

Cultural and linguistic variables may contribute to challenges in identifying children with ASD and contribute to the disparity in the diagnosis of ASD among some ethnic groups (Begeer, El Bouk, Boussaid, Terwogt, & Koot, 2009; Dyches, 2011). While the core characteristics of ASD are common across cultures, parental response to the symptoms are not (Dyches, Wilder, & Obiakor, 2001). Signs and symptoms that are clearly "red flags" in western health or education systems may not be viewed in the same way for someone from a culture that may not define the disorder. One factor contributing to the inaccurate classification and diagnosis of children with autism is the "families' cultural and linguistic interpretation and reaction to receiving the diagnosis and to obtaining services" (Wilder, Dyches, Obiakor, & Algozzine, 2004, p. 106). Some cultures stigmatise disability and families may feel that a child with a disability is something that needs to be hidden from other families and the community, which may influence the type of care the family seeks (Wang & Casillas, 2012).

Assessment process

• When conducting assessments, consider the client/ family’s level of acculturation.
• An assessment may have to be completed over multiple sessions if there is a need to assess a child in more than one language, collaborate with an interpreter, utilise alternate assessment formats, and find and/or establish norms for a given client population.
• Discuss the family’s comfort with speaking and understanding English and where required provide an interpreter at all appointments. Ensure that the family understand that the interpreter is bound by DHB privacy and confidentiality policy.
• Use a translated screening tool when available (see- http://mchatscreen.com/mchat-rf/translations/).
• Reinforce that such an assessment is part of standard care since the concepts of screening, early identification and early intervention may be unfamiliar for families from CALD backgrounds. For many families, these concepts are culturally bound and they may perceive that their children will be stigmatised in their communities by participating in these practices.
• Stress that early diagnosis and intervention is associated with better development and improved functioning for their child, in the long-term.
• Practitioners need to determine how familiar and comfortable the client/parents/grandparents are with testing practices, as familiarity with testing procedures may influence performance during the assessment process.
• Remember that in some families, questions about a child’s skills may go unanswered since they may feel intrusive. Some families may view screening as “looking for trouble” or feel that things clinicians think are problems are not an issue. Still for other families, their responses may shed light on their ability, background or resources. Thus, communicating slowly and clearly while listening carefully and fully engaging families produces the best results.
• It is equally important to ask questions about the family’s understanding of and expectations for child development. This could provide a wealth of information and set the stage for effective communication about child development in general and their child’s development specifically.
• Schedule a follow up visit for one or two weeks after the assessment to talk through what happened at the visit.
• More persistent follow up to keep families engaged may be required.

Explaining the screening questions

• Consider whether parents understand the screening questions because terms used in screening tools may have different meanings when interpreted. Consider literacy level, as well as language. Interpreters and culturally matched staff (who are proficient in distinct cultural issues) can assist greatly since written screening tools may be difficult for some families to complete, and for clinicians to interpret.
• Taking time to explain the screening questions is critical to being certain that CALD families understand and answer questions accurately.
• It is important to consider that some terms may not exist in the client’s language. In addition to providing an interpreter, it is important to provide written translated information for parents. Parent information can be downloaded from http://www.maactearly.org/translated-materials.html.

Communicating concerns about child development

• Communicating concerns about a child’s development in a different language or across cultures can sometimes be tricky. While having a general understanding about the cultural group you serve may help in anticipating particular reactions or issues, clinicians must avoid stereotyping. Each family is distinct, irrespective of their cultural identity. When discussing screening concerns, miscommunication can often be avoided by starting with the families’ perspective.
• Ask questions as an invitation for parents to tell you what they are thinking, such as:
  • “Do you have any concerns about your child’s development?”
  • “What do you think is the cause of this concern?”
• Clinicians should express their concerns only after the family’s perspective has been shared, but they should also be mindful that families may not see a concern, especially if they are first time parents. Targeted questions about the child’s behaviour, communication, play, and interactions with other children and adults help clinicians probe further. When the issue is a failed or positive screening test, it is important to emphasise that it identifies only that a child is at higher risk for ASDs. It is not a diagnosis.
• Be careful about using the word “autism” if families do not ask you about it specifically. If they do, it is critical to ask:
  • “What have you heard about autism?"
  • “What does the term “autism” mean to you?”
• Reassure parents that when a child has problems with talking, interacting, or behaviour, there are many things that can help a young child develop these skills.

More information about considering culture in autism screening and translated screening tools can be downloaded from the following sites:

http://www.maactearly.org/considering-culture-in-autism-screening.html

http://www.positivepartnerships.com.au/multicultural-resources