Perkins School for the Blind Transition Center

The Invisible Struggle: Autism Diagnosis in Immigrant Families

According to Constance Baker Motley, the first Black woman elected to the New York State Senate in 1964, “something which we think is impossible now is not impossible in another decade.” About 11 years back when I was graduating as a Doctor of Social Work, I held similar thoughts for the vulnerable immigrant communities, especially those immigrant community members who were and are also caregivers for individuals on the Autism Spectrum. Over the past decade Autism cases had a significant rise in numbers. Per a CDC report in 2021, “1 in 54 children had been diagnosed with autism in 2016 compared to 1 in 150 in 2000.” Per a recent study “autism cases have tripled in the New York and New Jersey Metropolitan area from 2000 to 2016” (Shenaouda et al., 2023). An article in the New York Times on March 23rd, 2023, claimed that “in 2020, an estimated one in 36 8-year-olds had autism, up from one in 44 in 2018.” All the increases in autism cases have been reported from immigrant communities and communities of color. Hence, a vulnerable section of the population is even more vulnerable when it comes to a disability diagnosis for the younger generation. In addition to this, during the previous administration, it should be noted that many immigrant families made the decision to forgo autism services for their documented citizen children because the parents were not documented.

Portrait of happy Indian family sitting at a sofa

In 2012, my thesis recommended options for needs assessments for the caregivers and identifying their problems in their own words, development of new accessible services, and professional development through staff training. I am aware that, in NYC, a South Asian non-profit called Autism Society Habilitation Organization (ASHO) had conducted a needs assessment for the Bangladeshi immigrants who were caregivers to individuals with Autism, but even though the data was published and shared with local politicians, lack of funding prevented the program recommendation from hitting the runway. According to ASHO Executive Director, Rubaiya Rahman, unaddressed needs of the immigrant population around ASD services will be a “Tsunami problem” in near future.

This article is being written with the aim of focusing on the challenges of immigrant community members when they face the stressors of a child being diagnosed, or even misdiagnosed, with an Autism Spectrum Disorder. The article will highlight the unaddressed needs in the form of late or missed diagnosis, of the lack of service efficacy and lack of adequate and accessible resources. In my career span of nearly 20 years, I have spent the past 11 years working for and with the immigrant population in New York State. As a Mental Health therapist and a private consultant, I have come across multiple examples suggesting immigration challenges around autism diagnosis. I will share case examples that focus on the unaddressed challenges that immigrant community members face in NY, which is a sanctuary state, and where, regardless of the immigration status of families, no child is left behind. However, due to medical and other professional malpractice, immigrant community members often find themselves at a loss.

To prepare for this article the author picked 3 families from diverse immigrant communities that have faced significant challenges with an autism diagnosis and from being in an immigrant community. One such parent mentioned earlier in this article is a parent advocate and a very active community leader.

Rubaiya Rahman founded ASHO, a nonprofit organization dedicated to developing habilitation services for young adults with autism and creating a safe and supportive space for aging parents who are caregivers. Being an immigrant and a parent of a young adult with Autism, Ms. Rahman has faced significant issues, cultural bias, and lack of services while navigating the resources and understanding the legal options, being a lawyer herself. Professionals in Rubaiya’s country of origin had already recommended that she seek support from the “western world” that was advanced in working with a child already diagnosed with autism. When Rubaiya landed in the USA, she was a law student and trying to understand the process of navigating the available resources. While she was here at her child’s Early Intervention stage, to perceive Autism and what it means to her child and family was a challenge. Speaking to her child’s pediatrician was helpful, as there she was able to follow the basic developmental milestone checklist, and was informed about getting the child evaluated and about enrolling in early intervention services. But what if the pediatrician misled the patient’s family and ignored the virtue of medical ethics?

Unlike Rubaiya, DM (name changed per request) was not fortunate enough to find services for her child. DM is a legally documented immigrant, while her family members are permanent residents. By the age of 5 years, DM’s child was showing issues related to socio-environmental and behavioral skills. The school labeled it as anxiety as the child would stop communicating with anyone in school, and soon, the child was also getting speech services as per her IEP goals. DM always advocated for her child and thought that the child’s speech delay was causing the anxiety, hence leading to their showing anxiety in public. However, DM was never able to relax her red flags, and at every visit kept mentioning concerns that landed on the deaf ears of the pediatrician. Being from the same country of origin, the pediatrician crossed the thin line of biomedical ethics and, while negating DM’s concerns about her child, lied that Autism is now simply a common label for children around age 5 and that nothing is wrong with the child. The pediatrician further commented that “immigrant kids are easily labeled as Autistic kids and DM would not want her child to be a part of that data.” DM was unable to get a referral to get her child evaluated for her atypical behavior in social settings and lack of communication skills. She did not want to take steps against the provider as she had fears of retaliation from the provider and feared it may lead to some legal concerns for herself and family. The 5-year-old now had an IEP for speech delay and was getting mental health services for anxiety and selective mutism.

Post COVID-19 pandemic when the child returned to school, the child was verbal but now had issues with peers because the child had no social skills. While the vocabulary had increased, the child lacked finesse and repeatedly the school would complain to DM about their being rude and frustrated with teachers and peers. Soon the child was labelled for making racist comments in school and the situation seemed to be going out of DM’s control. DM had to change the pediatrician to be able to move ahead, and so she did. She was finally able to get her child evaluated and now her suspicions were validated, as the child was diagnosed with ASD but a delay of 4 years had already passed because an early evaluation was discouraged by a culturally competent provider who forgot his biomedical ethics and denied the patient’s parent/caregiver autonomy. While DM mentions that it was a relief to get the diagnosis, the delay led to bigger challenges in navigating the appropriate services. As soon as the child got the ASD diagnosis, the mental health clinic that was providing services backed out, terminating all services, by stating that the clinic is not equipped to serve individuals with Autism. Though resources were placed at the time of termination, the child currently has no formal mental health services, and DM is still trying to get the OPWDD to schedule an evaluation date via the county office. Prior to the diagnosis, the child was getting mental health services and DM was getting culturally competent parenting support and her child was getting weekly counseling focusing on daily social skills and better functioning that was helpful.

What if the child had been diagnosed at the right age? But with autism being a common diagnosis with behavior such as flapping hands and repeated activities, what if the evaluation was wrong? Often immigrant families face misdiagnosis due to stereotypical thinking and active professional assumption. To top it off, community members and relatives blame it on the non-immigrant society for labeling vulnerable immigrant children, especially children of color. One such case narrative is as follows.

RG (name changed as per request), a mother of two, raised concerns about her younger child’s delay in speech and social skills. She was immediately referred to Early Intervention, and soon an evaluation was made stating that her child is on the spectrum, followed by about 10 hours of therapy services being started for the child that included OT, PT, and ABA therapy. Five hours of speech therapy were also added. Another strong mother, RG recalls when a so-called culturally competent speech therapist walked into her house and even before the official diagnosis was in, she diagnosed the child and told RG that her child is “severely autistic” and no speech can bring any language to him. The speech therapist never returned following RG’s request to the service coordinator. The ABA therapist who was from a different immigrant community was there to help the family. While the countries were different the culture was close for both the ABA therapist and RG. RG was able to share her concerns with the ABA therapist and, with quality services, the ABA therapist started pushing for a re-evaluation. To the ABA therapist who was an expert in ASD cases, RG’s child showed other delays but none of those advocated for an ASD. Meanwhile the community member would call RG and blame her for “thinking too much” and often told her “these people have a habit of calling our boys crazy, you do not get your child evaluated as they will never let him grow up to be normal.” While RG advocated for her child, a new speech therapist started to provide services and, similar to the ABA therapist, found manageable speech and feeding delays and requested for a re-evaluation similar to what the ABA therapist had requested. Re-evaluation negated the ASD diagnosis and explained the child had oral motor developmental delay and with speech and feeding therapy the child would be able to function better. The frustration was due to the lack of expressive language. RG reports that her child now sings and eats by himself. He is on his school soccer team and he “talks.” RG has now relocated out of NY. However, even now after all these years, RG still struggles to get timely services for her child because at every administrative and bureaucratic level she has to prove that she is a naturalized citizen and is eligible for certain services to be approved earlier unlike for new immigrants who need to wait for clearance and approvals.

The cases do not do justice to the plethora of challenges faced by immigrant communities with or without the halo of immigration law. These challenges range from cultural bias to self-imposed lower community esteem to hesitation and of course lack of much needed services. Providers misleading consumers, crossing much needed ethical boundaries and creating insecurity are challenges for many immigrant community members who are hesitant and fear retaliation. Many community members often find the system complicated; it could be due to language or due to the long waits that often lead to impatience and lack of interest in services, or both. Also, the stress due to legal status cannot be ignored.

While we, on a daily basis, discuss and share information about Diversity, Equity, and Inclusion, I have yet to see a significant change in addressing the autism needs of the immigrant population. These community members and caregivers are looking for culturally competent service providers who provide the right kind of services, and neither make statements based on assumptions nor practice out of their professional scope. Challenges in immigrant communities are often laced with language barriers, culture shock and lack of perception about diagnoses and their prognoses. While many typical American families are open to sending their young adults to group homes, and create a foundation/trust for the care of their child with autism, various immigrant families by virtue of their principles do not have this concept of sending their children away to group homes. They may feel somewhat more comfortable if there are residential spaces where similar community members reside so that when aging parents come to see their children, they also get an existing parent support group. Lack of English proficiency and hesitation to ask questions or advocate for services are common issues with some major immigrant communities that are also the fastest growing communities, especially in NYC. Being aggressive and seeking answers is not considered positive behavior in certain immigrant communities and sending children with physical or mental challenges to group homes is taken as lack of care and love. It is hard for many immigrant community parents to part from their young adults with a diagnosis, and to place them in a group home is not a regular caregiving practice. Of course, developing a trust and a foundation is often impossible for immigrant community members who work multiple jobs to make ends meet and strive for financial security.

As a professional in the field for nearly 20 years and working with immigrant communities, it is very easy for the author to identify the issues and list them. The real work comes when the issues are listed and need to be resolved through affordable recommendations. To address the challenges, it is important that professionals understand the caregivers’ perception of the diagnosis and use appropriate language to build trust and rapport so that services and knowledge can be adequately transferred. Cultural competency can be used for service efficacy and must not be misused for crossing professional boundaries and the scope of practice by the provider. Immigrant community members should not experience isolation due to a diagnosis but should get supports that would take away their hesitation to advocate for their children, and for themselves, without the fear of retaliation. Often families migrate to seek better life outcomes for their families. These expectations of life should be taken care of when addressing Diversity, Equity, and Inclusion, because this also includes ableism and ensuring appropriate outcomes for a significant representative of our future.

When we think of legal issues and immigrant communities, we automatically start thinking about visa status, permanent residencies, naturalization and the scope of services and benefits with each level of immigration status. As correctly mentioned by one of the parents quoted in this article, Rubaiya Rahman, who is also a lawyer and works closely with the community, first it is important to acknowledge that the community has these unaddressed needs; services are required in a timely manner and made accessible to the community regardless of the immigration status of the children. Professionals should be legally answerable for practicing outside their scope of licensure and be mandated to follow patient/caregiver autonomy if the patient is a minor. Culturally competent legal advisors should be available for parents to discuss the future for their children so that life’s planning can be made smoothly and appropriate to the needs of the individuals with diagnoses. Only then can we design an effective and legally sound service plan for the individuals with an ASD diagnosis.

Veera Mookerjee, PhD, LMSW, is Founder and Director of Resolveera – Serving Underserved Populations. Dr. Mookerjee is also Westchester Division Director for the National Association for Social Workers (NASW) – New York State Chapter.

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