The dual journey: Autism and immigration

By: Sarah Atsu

Shoes lined the wall as I stepped into the house. I began to remove my own, but she stopped me with a gentle hand and kind, tired eyes. “It’s okay; you don’t have to take your shoes off.” I smiled in return, stood up straight, and followed her to the living room. There, her son, Michael, sat watching TV.  At his mother’s request, he greeted me with a jovial “hello!”

“Would you like some water?” she asked. I said ‘yes’ and thanked her as she headed toward the kitchen. As I began to set up for our interview, my eyes fell on a messy back room filled with boxes and various other items.

Despite moving into her new home almost a year ago, Christina Holcomb still had not unpacked many boxes. As she returned with my water, she apologized for the mess.

“With work and Michael, I haven’t had much time on my hands,” she said apologetically. Gesturing to her son as she handed me my water.

Holcomb is an Indonesian immigrant and mother of two children. Her younger daughter, Jennifer, ‘Jenny’, is a graduate student, finishing the last few months of her physician’s assistant training and education. Her 27-year-old son, Michael, is now her main priority and responsibility. 

Holcomb gave birth to both Michael and Jenny in Indonesia. When Michael was three-years-old, Holcomb’s pastor advised her to take him to the doctor because he still was not talking.

“I took him to the doctor because I had a preacher tell me: ‘he’s not talking and he is three-years-old. It looks like something may be wrong with your son,’” Holcomb says. “So, we went to the doctor, and he diagnosed [Michael] with autism.”

Despite being in her homeland, Holcomb says she did not receive much support with her son. She still had to balance working, running the household, and her second child, Jennifer, who was born five years after Michael. Although she knew that America had more opportunities and help for special needs children, that was not the reason she moved overseas. In fact, the first time Holcomb came to the United States, she was alone.

“When I came here, I came just to make some money for [my children] in Indonesia,” Holcomb said. “I was by myself.”

When Michael was 10-years-old, and Jennifer was five, Holcomb moved her children to the United States with her. Once there, she found the public school system to be a big help.

“With the kids in school, I was able to go to work without worrying about their wellbeing,” Holcomb said. “As Jenny grew, she was also a big help. I could work longer, and after school, she was home with her brother.”

Despite the relief she felt not having to worry about Michael while she was at work, and the help Michael was getting at school, Holcomb says she was not aware of the multitude of other therapies and aids available to help Michael learn to take care of himself outside of school

“When I came, I did not speak English well,” Holcomb says. “I did not know what was available, and I did not know where to go to find out.”

When she did finally find out about other opportunities for Michael to receive help learning to take basic care of himself, Holcomb says other roadblocks arose.

“In 2010, when I was with my ex-husband, I asked him if we could apply for assistance,” Holcomb says. “But he said our income was too high. I did not know where else to look.”

Even if Holcomb had known where to look, it is unlikely that she would have received much help for her case. It was not until January 1, 2018, that the state of Georgia mandated health insurance coverage for autism past the age of six. By 2018, Michael was already 21-years-old. Although coverage for people with autism was now provided until 21-years-old, for Michael it came too late.

Holcomb now finds herself consumed by two things: working, and caring for her son. As Jennifer’s time has been consumed by her vigorous studies and career, Michael is often left home alone– usually in front of the T.V. Holcomb says she worries for his safety and well-being when she cannot be there to do things for him.

“Michael can use the microwave,” Holcomb says. “Once when he was home alone, I left some food for him to heat up. I forgot to take the spoon out, and when he started the microwave it could have started a fire.”

Other than  spending the rest of his time, until his mother returned, in a slightly smoky house, Michael was okay, and Holcomb, relieved. But, instances like this make the truth of her and Michael’s lives apparent to her, and she desperately worries about the future, when she can no longer be there for him.

“I’m worried about what will happen to him when I am not in the world anymore,” Holcomb says. “Jenny said she will take care of him, but I’m not sure. Jenny is too busy, she isn’t much help at home anymore.”

Concerned for her son’s fate in a world where she no longer exists, Holcomb’s focus is on taking care of him as well as she can now, as she seeks solutions outside her daughter taking over the caregiver role in her son’s life.

A mother’s answer to a lonely journey

For many immigrant parents living in the United States, Holcomb’s story is a painful reflection of the struggles they face caring for children with developmental disabilities such as autism. Many also struggle with knowing where to go for help and assistance, especially as they are working to secure their citizenship. Many cultural differences can also create barriers between them and seeking the help they need.

Dr. Afua Amoah Kubiti, the founder and executive director of the non-profit organization Autism Wonders, is committed to educating immigrant parents about the resources, therapies, and programs available to them. Furthermore, Autism Wonders provides support and a network for these parents, fostering a sense of community.

Kubiti’s passion for immigrant families raising children with autism stems from her own experience with her son.

“I have a child with autism, a developmental disability,” Kubiti says.

“When my child was first diagnosed, at the age of three-years-old, my question to the doctor was: ‘So where do we go from here? What does the future look like for my son?’ and the doctor told me they didn’t know.”

Kubiti is a Ghanaian immigrant, living in Georgia. She says that for a parent who is not Native to America, a diagnosis such as autism can be a very hard and lonely one. Realizing that the journey ahead of her and her son would not be easy, Kubiti joined a support group. However, it did not offer the kind of support she needed.

“When I went to the support group, I saw that the group was not meeting my needs as an immigrant mom,” Kubiti says. “Nobody there looked like me, culturally we were different, the things that mattered and affected us were just different.”

From that experience, the idea and passion for Autism Wonders was born. 

“It triggered me,” Kubiti says. “I realized that there could be other parents like myself, who don’t feel as though they belong there, so why don’t I start something myself.”

Working with another Ghanaian parent facing similar difficulties, Kubiti started a support group, and the rest grew from there.

Kubiti acknowledges that all parents raising children with developmental disabilities face similar problems and challenges, but for immigrant families, those problems are just more intense, and often coupled with harsher legal and financial struggles.

Cultural barriers and the journey to diagnosis

Alice Osofomami is another Ghanaian immigrant, parenting three boys, the two youngest of which have been diagnosed with autism.

She says that although there were times when she knew something was off about her children, her culture played a role in her hesitation to get them tested, and ultimately diagnosed.

“When my second child, Rafael, was in pre-K, his teachers suggested to me that I get him tested for autism, but at the time I didn’t want to accept that,” Osofomami said.

In many instances, parents from non-western cultures shy away from accepting a diagnosis like autism. Kibuti attributes this reaction to the stigma and lack of understanding surrounding neurodivergence.

“Specifically for immigrant families, that cultural barrier can be a problem,” Kibuti said. “Their cultures definitely affect their ability to utilize the services provided to them. It may come down to a question of whether or not they are willing to pursue those services. People come from cultures where going to seek help to cope with intellectual and developmental disabilities, may signify you solidifying the presence of that disability in your life and family.”

Kibuti said that the refusal to acknowledge the possibility of a child having any type of developmental disability can cause many parents not to even go for the test because they don’t want to know.

For Osofomami’s son, Rafael, it was not until Kindergarten that she finally decided to get him tested.

Upon receiving his diagnosis, Rafael was placed into an individualized education program (IEP) at school. However, he was still having trouble focusing and managing his emotions. That’s when the school recommended that Osofomami seek outside help.

“The school put him in an IEP, but things were still not going well,” Osofomami said. “The school told me that in addition to his program at school, I could take Rafael to a private psychologist.” 

The school had recommended applied behavioral analysis (ABA), a behavioral therapy for individuals with autism that encourages more socially acceptable behaviors and expressions of emotions and discourages problematic behaviors.

With Rafael’s diagnosis, the therapy was covered by Osofomami and her husband’s insurance. 

Since receiving the therapy, Osofomami says her son has transformed. Now in middle school, Rafael is a far cry from the frustrated child she used to have to force to board the school bus.

“He used to hate school, it was hard work to get him dressed and on the bus every morning,” she said. “But after he started the therapy, he began to love school. He graduated from therapy now, but his grades are still doing well, and he is working very hard because he wants to get back into the regular class.”

Osofomami’s youngest son, Gavriel, is also autistic, but unlike his older brother, he is nonverbal.

“Rafael’s diagnosis was kind of a shock to me,” she said. “He was talking perfectly when he went to pre-K. Gavriel, on the other hand, started to talk, but when he turned three, he stopped.”

When Gavriel went to Pre-K, Osofomami took him to be tested and diagnosed as well. Although he still is not talking, she sees improvement. However, that improvement has not come without a price.

Osofomami and her husband have made adjustments to their lives to ensure that their sons can receive the therapy they need.

“There are a lot of challenges, especially financially,” she said. “When both boys were in therapy, we had to pick up Gavriel at 12, and Rafael at three to take them to therapy, so the whole day was just back and forth driving. Because of that, I am unable to work a full-time job.”

Before the boys’ diagnosis, Osofomami had a job as a live-in caregiver. She would work for five days a week, and then go home. Now, because she and her husband both have to work and make sure one of them is home to pick up and drop off the boys at therapy. Although the new schedule is draining, and the pay as a part-time PRN is scanty compared to her prior job, Osofomami still sees the sacrifices as worth it.

“If you want the best for your child, then you have to be willing to make these sacrifices,” She said.

Both of Osofomami’s children attended Key Autism services in Lawrenceville, an ABA clinic. Mac Smith-Dogbey is a Board Certified Behavioral Analyst (BCBA) at the institution. In this role, he provides behavior analytic services, as well as supervises lower level analysts and their administration of therapeutic techniques.

Smith has worked for a long time with children with varying ranges of developmental disabilities. He acknowledges that although children with developmental disabilities struggle, the parents often do as well.

“Caring for a child with a developmental disability is never easy,” Smith said. “I recommend that parents who can do so, seek their own help and mental health services.”

Gaps in services for immigrant families

While knowledge of autism has been present since the 1940s, Smith notes that it has only recently begun to receive serious consideration. Consequently, many government services designed to support families with neurodivergent children still fall short, lacking programs that adequately educate employees about the available resources, particularly for immigrant families.

Kibuti started as a social worker, and she says the quality of training on developmental disabilities is very poor.

“In terms of social work training, the gaps for them to appropriately serve this population, exist in the knowledge of disabilities,” Kibuti said. “I remember when I was doing my masters, we touched on intellectual and developmental disabilities, but it was not anything substantial.”

Kibuti says that social workers are the people interacting with the families. For them to do their jobs effectively, they must have adequate knowledge of the situations people are facing. Lapses in training on developmental disabilities, as well as resources for immigrant families, are gaps she is attempting to fill with her non-profit.

In addition to a lack of training in certain areas for social workers, Kibuti also wishes the school systems could have some reform in regard to the assessment of the cognitive abilities of students with developmental disabilities.

Although she applauds the school systems for their diversion, equity, and inclusion acts, as well as personalized classes and learning plans for kids with disabilities, she believes the assessments and grading scales require reform as well.

“There has been an intentional push for including and accommodating different students in the school systems which has been very helpful,” Kibuti said. “However, I think there could be more work in terms of how students with developmental disabilities are graded.”

Kibuti believes that current grading systems don’t take account of developmental systems which is problematic. Every person has their capacities, and not every child needs to be graded according to the set standard.

Kibuti described her stance with a metaphor.

“The bird can fly, but it can’t swim,” She said. “And the fish is great at swimming, but cannot fly. When you put a child with an intellectual or developmental disability against the standard, they may not measure up because they are not like the standard. Seeing those low IQ scores can be very demoralizing for both the child and the parent. However, those scores don’t mean a child is dumb, they may just have more strength in a particular topic.”