Learning that your child is on the autism spectrum is often like being dropped into a big black hole. There is no clear test for autism — no X-ray or scan — and much is left to interpretation. The signs are often vague, especially in young children, who might learn to talk or pick up social skills younger or later than their peers. Just getting the right specialists to see your child can take many months.
For children of immigrant families, this process is even more challenging. Is a child slow to start talking because several languages are used in the home? Is a child acting “differently” because of cultural norms or the trauma of moving from one country to another? Are clear signs of the neurological condition being ignored out of fear or shame? Immigrant families with children with autism and similar conditions “were more than twice as likely” as their non-immigrant peers to lack related care and to get adequate time with physicians, found a study published in 2012 in the journal Pediatrics. Insurance used to access care was also found to be an obstacle for many immigrant families.
“The study demonstrates important areas of deficits in the health care experiences of children with ASD … from immigrant households,” concluded the study’s authors. Several other studies have explored whether children of immigrant families may face higher rates for autism.
One study found foreign-born Black mothers were more likely to have children diagnosed with autism, and so were children of Vietnam-born mothers. Yet, still, much is unknown and unstudied.
With over 50 years of research into autism, from the original discovery of associated symptoms to dedicated centers active today, researchers are still producing new findings. These studies have recently found connections between the risk of autism and immigrant parents. Though the exact reason remains to be seen, many theories abound. Experts have seen patterns in stressful migration, medication, vitamin deficiencies, genetics, and even parent’s medical conditions. Meanwhile some have found language and cultural barriers as a reason for misdiagnosis, or none at all. As these trends continue to be investigated, parents reach out for help, seeking nothing more than for their children to lead full lives and obtain any help they may need.
Autism is a developmental disability characterized by differences in the brain, it leads to delays in language and learning, overall differences in communication, behavior, and social skills, a necessity for routine, as well as emotional and social withdrawal. Prior to 30 years ago, the diagnoses were given primarily to children with severe problems though, with study and time, has been broadened to include a range of conditions, giving birth to ASD or autism spectrum disorders.
The connection found with immigrant parents has been a result of studies done on Norwegian, Somalian, and Congolese families, as well as additional studies of the rate of autism diagnoses in Black, Hispanic, and Asian or Pacific Islander children. Sahan Journal reported that “as recently as 2010, white kids were deemed 30% more likely to be diagnosed with autism than Black children and 50% more likely than Hispanic children.” However, these rates in diagnoses between Hispanic, black, AAPI, and white children are being attributed to increased awareness and autism services for these families.
According to Spectrum News, “One clue that migration might play a role in autism came from a 2009 meta-analysis of 40 international studies, which together considered nearly 30 prenatal influences on autism risk…Also on the list: having a mother who was born abroad. That link was strong in studies conducted in Scandinavia but just missed statistical significance overall.” Further findings of high autism rates coupled with parents that have immigrated came from a Norwegian study on ASD between 2016 and 2019. “Researchers found that 0.74% of children in Sør-Trøndelag whose parents immigrated to Norway were diagnosed with ASD, compared to just 0.1% of children whose mothers had a Norwegian background. The children whose mothers had a foreign background also scored higher on an autism diagnosis test, averaging a score of 19 compared to 15.3 for children with ASD born to Norwegian mothers.” (Zime Science) Though arguments have been made for overdiagnoses of ASD children born to immigrant mothers and underdiagnoses of the opposite, the researchers of this study correlate severe ASD symptoms with children born to immigrant mothers.
Further studies conducted by the Department of Health Sciences, Karolinska Institutet in Sweden on 5,000 children with ASD found “One in five had both parents born outside Sweden, most of whom hailed from Africa, western Asia, and northern Europe. Higher rates of autism with intellectual disability were found to be among children of parents who had come to Sweden from resource-poor countries.” Although the studies being conducted are to both obtain more information about ASD and properly treat those diagnosed, there are those who may be reluctant to diagnoses, have cultural barriers due to ASD stigma, or have problems obtaining care for their children.
On the Autism Spectrum: Somali Community, a film in a series focused on raising awareness of ASD, parents shared their stories of recognizing early signs of autism in their children. “When he was a year and a half, I noticed that he was not talking like the other kids his age.” Farhia Abdinoor said. Another parent spoke about the repetitive speech of his son, and both expressed that initial worry over their child’s early development. Reaching out to experts and physicians, these parents were able to get a diagnosis for their children. Though, not everyone is exposed to ASD and may not know anyone outside of medical professionals with knowledge of it. “I have never seen anyone in my family, or known anyone, that has autism.” Farhia said. “My child was the first, but even now I really don’t believe my child has this.” Echoing her sentiments was Yusuf Samatar, saying “The most difficult thing for us was it is hard for a parent to accept that your child is different from other children.”
The difficulty parents find also have roots in cultural stigmas concerning autism. With his child’s diagnosis, Maki Gboro, residing in Denver, Colorado though originally from Democratic Republic of Congo, faced an initial surprise of his son’s connection with autism but also Congolese myths concerning it. “They say, ‘It’s just a disease that God gives you and you cannot do anything about it,” Gboro said. He continued to include that due to these perceptions of autism in the community, some children are never screened and do not receive early care while others don’t receive social support. Apart from the myths on autism are also cultural differences that make diagnosis difficult. Parents Bassem Fadlia and Nahla Bakry learned of possible ASD in their child, Muhammed, through the school district in Minnesota. However, when they followed up with physicians, this was refuted. New to the state, and used to different languages and forms of media, the parents worried about the accuracy of the testing, as some of the words and references used were types Muhammed would not understand. With a trip to the Minnesota Autism Center they received an official diagnosis.
An ASD diagnosis is not the end. Early intervention, therapy, and overall support allow children to grow up and accomplished whatever they set out to do. Young Muhammed, at age 12, after speech therapy and applied behavior analysis reached what researchers call, an “optimal outcome” no longer diagnosed as autistic. And there are those that prove goals are achievable with the diagnosis. College graduate, Hari Srinivasan, won the Soros fellowship at Berkley in 2022 for a Ph.D. With a bachelor’s in psychology, he has done intense study into emotions and has “served on the Interagency Autism Coordinating Committee of the National Institutes of Health, which advises federal policy around autism, and on the boards of several national advocacy nonprofits.”, according to Berkley.edu. Describing himself as a “minimally speaking autistic”, Hari spoke of some of his challenges and the achievement of his fellowship in an email interview with Berkely. “All over the U.S., there are but a handful of autistics with communication challenges like me in higher ed, let alone at a top university like Cal. My challenges are so significant that I even don’t have the option of choosing to not disclose my disability. It’s just too obvious.” The disclosure proved not to be a barrier and with time and effort, her may have indeed opened the door for many more. “This is a community where everyone knows everyone.” He continued. “The number who made it to college before me I can count on the fingers of one hand,” he added. “So, when I say I’m a first, especially in a Ph.D. program, that is literally true.”
Children like Hari and Muhammed were able to continue on due to great support, care, and their own determination. Even though connections are being drawn between immigrant parents and risk of autism, the studies are there to help diagnose and treat so children and their parents have time to cope and grow from and early stage. With most of the reasons still under investigation, the risk factors will assist in diagnosing children early enough to provide treatment. Regardless of the migration factors involved, the primary concern is assistance and growth.
