Multiplicity: Life with Two Autistic Siblings
With an estimated 1 in 88 children in the United States on the autism spectrum, an increasing number of families face the challenges associated with caring for autistic individuals. But what is it like for families that have multiple children on the spectrum? How does this affect interpersonal dynamics, finances, living situations, and marriages? And what is life like for non-autistic siblings? To answer these questions, Autism After 16 spoke with Faith Jegede and Lauren Brown, two women who grew up with multiple autistic siblings.
Faith Jegede is a 25-year-old Londoner, a writer and speaker who works at Premier Christian Radio. Jegede has two younger brothers, Remy, 23, and Samuel (Sam), 17. She’s best known for her 2012 TED talk, “What I’ve Learned from My Autistic Brothers.” Lauren Brown is a 22-year-old Californian who works at Surf City Graphics while studying at Cal State University Long Beach. Brown has 20-year-old fraternal twin brothers on the spectrum, Ian and Kyle. Brown is an advocate as well; in February 2013, she created a Facebook page, Autism with Ian and Kyle, to help raise awareness of autism.
Family Life and Housing
Where do Jegede and Brown’s families live, and how do they manage care for their siblings? Jegede’s family has a three-bedroom townhouse in London, where she has shared rooms with both Remy and Sam in the past. Sam, the higher-functioning of the brothers, lives at home with his parents full-time. Sam has strong language skills, yet needs support when it comes to social skills. Remy, who does not speak, lives in a group home a short distance from the family. He transitioned to his first group home “when he was 16 or 17,” Jegede says. The move was fueled by challenging behaviors, “tantrums, hyperactivity, intense frustrations.” She notes, “I’ve seen things that I don’t believe anybody wants to see, that I’ll never talk about in public.”
Brown’s family also lives in close quarters, as they’ve recently downsized from a house to an apartment. Ian lives at home, and Kyle has lived in a nearby group home for the past decade. (He comes home for visits with his parents and siblings on weekends.) Brown describes her brothers by saying that Kyle is, “loud and hyper and in-your-face,” while Ian is, “very laid back, but he doesn’t like to be touched.” Before Kyle lived in the group home, Brown says, “He had tantrums, and it was too much. We had our own rooms, and often I’d lock my door to get away.” Kyle’s behaviors included slapping himself in face, punching holes into walls with his head, and biting others.
Practical Caregiving Supports
Both Jegede and Brown’s families have specific structures in place to facilitate full-time care. Jegede’s father has his own business, and her mother stays home to care for Remy and Sam. Jegede’s brother’s received care from respite workers provided by their local government when they were younger. However, Jegede says, these caregivers proved less helpful than hoped: “It wasn’t consistent, and it wasn’t usually the same person. My parents would leave me with the workers, and I’d teach them how to get used to my brothers, and the next time, they’d be gone!” Jegede is also ambivalent about Remy’s current care situation. She appreciates that he has a residential placement, but says, “He was really developing when he was at school; he was involved with music, and had more interaction. Now it’s very different. When [individuals on the spectrum] get to 18, schooling ends and caring begins. But [individuals] still need that level of education, and it’s not programmed into their daily life.”
Brown’s family has had a more positive experience when it comes to group homes and a privately-hired caregiver. Both parents work outside the home; Brown’s mother is a nurse, and her father as an engineer. Brown says, “We have a caregiver for the after school hours; she’s been the most helpful support. She’s been with our family for almost 15 years.” Brown notes, “My parents are very protective of Ian and Kyle … they wanted to pick someone themselves.” And Brown says that the group home staff has helped Kyle mitigate his aggressive and self-injurious behaviors. She says, “Now, instead of biting, he’ll give me a hug. He doesn’t do tantruming as much anymore. He’s had success at the group home.”
Financial and Medical Impact
Supporting multiple individuals on the spectrum is costly. Brown’s brothers’ Social Security benefit checks have helped pay for the cost of their care, but her parents make up the difference. (Brown mentions that her parents will “pitch in” support for Kyle’s group home, buying items such as a TV, food, and extra blankets.) Medical issues have also been a factor for the Browns, as Kyle has a seizure disorder. And they’ve downsized their living space in part so that they will be able to afford care in the future.
Jegede’s brothers have relatively few medical issues. Remy has celiac disease, but on the whole, Jegede says, “I know how fortunate [my brothers] are; I’ve seen the wide range of conditions you can have along with autism.” She also mentions financial constraints. Her parents would like to transition Remy out of his current placement, but, she says, “It’s really a matter of finances. In our current house, there’s not space! Ideally, we’d like to have the resources to support him in the best way possible.”
Jegede speaks candidly about the effect her siblings’ care has had on their parents’ marriage. She observes, “It’s been a challenge, but their relationship got stronger, because they had to act as a unit by force … And they leaned on their [religious] faith.” Brown’s parents are also married. Yet as noted in the 2011 NIH study, “The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder,” parents of multiple autistic individuals have consistently higher levels of stress. The study points out that, “[The] severity of aberrant behaviors may be related to marital dissolution. Having multiple children with an ASD in the family may also increase divorce, as parenting resources may be particularly taxed ...” Families like Jegede’s and Brown’s face the stresses of dealing with difficult behaviors and supporting multiple individuals.
Additionally, cultural differences have made an impact on both families. For Jegede, growing up in a British household with a Nigerian father and a Barbadian mother involved a culture of privacy. She says, “Autism is something that, culturally, is not expressed openly. My parents are private people; I’m probably the most ‘public’ person in our family.” And Brown says that when her brothers were born 20 years ago, there was significantly less public awareness of autism, and that her family life felt more “private” as a result.
Despite these obstacles, Jegede and Brown clearly adore their brothers. Jegede says, “We have a bond that I don’t think I’ve seen in other brother and sister relationships.” She gives Remy and Sam credit for shaping her interests, saying, “[My brothers] made me into the person that I am. I’m passionate about communication. If I didn’t have challenges with communication [with them], I wouldn’t be this passionate about it.” Likewise, Brown speaks about her brothers with fondness in her voice. She says that Ian and Kyle have certainly changed her for the better. Thanks to them, she says, she gives people the benefit of the doubt: “I tend to be understanding if someone’s acting different. I don’t judge. I just think, ‘You don’t know their lives.’”
Siblings as Caregivers
As eldest children, Jegede and Brown have helped to care for their siblings from a young age. As Jegede says, “When I lived at home, I would help with feeding, teaching, playing, and potty training.” Brown often assists her parents too. For example, she says, “If my dad would go grocery shopping with both [Ian and Kyle], I’d kind of corral them and help. At the house, I’d help with getting ready for bed.” Even so, she says that when both brothers lived at home, the family never went out. And only one parent would come to events and holiday celebrations, because Kyle required constant care. Even now, when Kyle is home on weekends, Brown says, “I can’t really have friends over, because that’s his time.”
Jegede also says that it’s been difficult to connect her family with her “outside” life. She says, “Some of my friends did not know I had autistic brothers until last year. When we did invite people over, they didn’t quite understand the situation, so we ended up isolating ourselves anyway.” And the responsibility involved in being an elder sister sometimes set her apart from her peers: “On school days, as soon as I came in the door [to my house], I was a different person, a responsible figure. At school, I could just be a kid.” Brown says that it was difficult to invite friends over for visits and sleepovers; though they were “understanding,” she felt that it was hard for them to relate to her home life.
Likewise, Jegede says, “I had to grow up very fast, and I didn’t realize that until recently. In my late teens, my mom and I had a conversation about it. It was an emotional conversation, because our situation was incredibly intense.” In turn, Brown remembers, “Growing up, I had to defend [my brothers], and always watch over them.” That continues to this day. She recounts a recent shopping trip, saying, “Ian can’t go to bathroom by himself, so I took him into the ladies’ room with me. And one lady said, ‘What is he doing here?’ So I said, ‘He’s autistic.’”
Looking to the Future
Jegede and Brown are frank about how their siblings’ futures are intertwined with their own. Without being prompted, both mention the possibility that they’ll become their brothers’ full-time caregivers. Brown says, “After our parents pass away, I’ll take care of [my brothers]. They probably won’t live with me, but if they ever have to, then for sure, they can.” Jegede and her fiancé are moving to the United States, and she’s lost sleep over the effect this major transition may have on her brothers. However, she says, “If we have to move back to England to care for [my brothers], we’ll do so.” In contrast, Brown says, “I’ll always stay close to [my brothers]. I love California. They’re here, and I’m not going to move them across the country.”
And when Jegede and Brown consider starting families of their own, they do so with their brothers in mind. They ponder both their commitment to care for their autistic brothers as well as the odds that their children will have autism. (Though autism has a genetic component, heritability remains complex. Children of siblings may have an increased likelihood of being autistic, but little more is known.) When asked how if they think about the possibility of having children on the autism spectrum, Jegede says, “All the time! I definitely want children, and I do get concerned about the prospect.” Even so, Jegede and her fiancé are open to the possibility. She says, “We rest assured that God’s in control, and I try to ‘edit out’ the rest. And I think about introducing [my children] to my brothers, helping them know how to love all kinds of people.” Brown is undecided, saying, “I think about one day having my own family, but it kind of scares me. But I like the idea of including my brothers in my family life. It would help teach my kids acceptance.”
Their responses are different, yet both women want to connect their brothers with their future families. Both imply that their children will have much to learn from their autistic uncles. They believe that their brothers have a place in their future, as they do in their hearts. And that belief is, perhaps, one of the greatest gifts that having multiple siblings on the spectrum can give.