“I Thought the Regional Center Was a Deportation Trap” Documenting the Life Experiences of Undocumented Mexican Mothers of Children with Autism

Background: As we attempt to include more under-represented, low-resourced families in research studies, one group that is difficult to engage is undocumented families. We know little about whether these families are obtaining a timely diagnosis or services for their children with autism.

Objectives:  This study attempts to examine how undocumented low-resourced Mexican mothers of children with autism navigate the special education process, the helpers and challenges they face in doing so.

Methods: In partnership with a community-based organization, six undocumented Mexican mothers of children with autism spectrum disorder (ASD) were recruited to participate in one interview using snowball sampling. Mothers were interviewed in a semi-structured format in settings ranging from a community center for immigrants, public library, and participant’s home in a large city in Southern California. Various procedures were put in place to safeguard confidentiality. All participants were asked to provide a pseudonym due to their undocumented status. None of their personal information was collected. The interviews, transcription, coding, and final analysis were conducted in Spanish using Dedoose software. Two raters, a doctoral student and a research assistant used open-coding techniques applying conceptual labels looking for common themes across interviews. Inter-rater reliability was established using Pooled Cohen’s kappa at .78.

Results: We examined three broad themes during the open-coding process (1) Immigration experience and cultural differences (2) Financial challenges and helpers (3) Autism diagnosis and services. In terms of immigration and cultural experiences results suggest that undocumented Mexican mothers experienced grim circumstances in their countries of origin (e.g. “Here, we are poor, too, but at least we have a plate of food on our table”), which forced them to immigrate to the United States. Three of the mothers experienced significant challenges en route to the United States (e.g. “I crossed the border with my daughter in the trunk of a car with four other people- we were very scared”). The other 3 mothers stated that they originally entered the United States on a tourist visa but then overstayed. All of the children with ASD were U.S. citizens by birth. In terms of financial challenges and helpers, most of the mothers had very low household incomes (i.e. $10,000-15,000/year) (“e.g. I used to get paid by the piece (of sewing) and worked 16-hour days, not even making minimum wage”). Most mothers had difficulty accessing healthcare or financial benefits because of a lack of social security number despite having income tax regularly deducted from their paychecks. Finally, in terms of ASD diagnosis and services, most of the mothers received a late diagnosis of ASD for their children (e.g. over 6 years of age) delaying critical early intervention services (e.g. “I had no idea what autism was”) and had difficulty navigating the special education process at the regional center and public schools (e.g. “I thought the regional center was a deportation trap”).

Conclusions: School staff and service providers need to be aware of the challenges of serving these families in order to avoid late diagnosis and services gaps for their children with ASD.