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Friday, July 29, 2022

Autism and Inequality: International Perspectives

Key factors that may make a family vulnerable and at risk of missing out on support include poverty, limited access to education, poor literacy, being subject to structural racism and other forms of discrimination and stigma. Families caring for a child with autism are more likely to be affected by poverty because the child’s needs may prevent the caregiver from generating an income (Minhas et al., 2015; Tilahun et al., 2016). In countries where (mental) healthcare is paid for out-of-pocket, seeking help may result in catastrophic payments, meaning that the costs comprise a very high portion of household income (de Leeuw et al., 2020; Gona et al., 2016). Families from lower-income households report poorer access to care (Bishop-Fitzpatrick & Kind, 2017) and poorer quality (Magaña et al., 2015) of care for their child with autism. Even when children are diagnosed and families are offered intervention, barriers linked to poverty (e.g. transportation costs) may prevent them from attending the intervention (Koerting et al., 2013) or having the time and capacity to actively engage with the intervention (Szlamka et al., 2021; Tekola, Girma, et al., 2020).

Low literacy is common in low-income countries but also affects vulnerable groups in high-income countries. Caregiver-reported screening instruments developed and tested in primarily highly educated families may not work as well in groups with limited literacy (Khowaja et al., 2015). Similarly, interventions developed and tested with highly educated caregivers may require adaptation when applied to families with low literacy and limited prior education.

Families with a cultural minority status in the country of residence may be less likely to access services and report lower satisfaction when accessing such services (Magaña et al., 2015). This is likely due to systemic factors. For example, clinicians may be less likely to recognise autism in ethnic minority children than in children from the cultural majority (Begeer et al., 2009) and in some contexts autism identification rates in ethnic or racial minority children (Begeer et al., 2009; Maenner et al., 2021) or children from Indigenous backgrounds (Bailey & Arciuli, 2020) lag behind identification in White children. Access barriers linked to racism may also be intertwined with language diversity. Latino parents living in the United States with low English language proficiency reported receiving poorer primary healthcare services than those with good English language proficiency (Pippins et al., 2007).

Stigma towards autistic people and their families occurs globally and across different cultures (de Leeuw et al., 2020; Han et al., 2022). In low-resource contexts where awareness of autism is low, stigma may be particularly strong (Tekola, Kinfe, et al., 2020). Stigma may affect how families interpret the signs and symptoms of their child, when and where they seek help (de Leeuw et al., 2020) and how they engage with intervention services (Guler et al., 2018; Koerting et al., 2013).