“At the end of the day children with autism are not given to strong special people," Erin said. "We are made strong and we are made special by having to raise that child with special needs, and, yes, we are very often given more than we can handle."Carolyn Van Houten
Rates of autism in the U.S. have continued to soar, hitting an all-time in the latest statistics, which found that one in 68 eight year olds, or and estimated 1.2 million children under 21, are affected by the developmental disorder.
For those families, living with autism is a daily test. “My relationship with my son is a journey,” says Erin O’Loughlin, whose nine year old son Marcus was diagnosed at three with moderate to severe autism. “You have all these hopes and dreams and expectations of what your child is potentially going to be, and all of a sudden those hopes and dreams and expectations change. You have to have different dreams.”
O’Loughlin, her husband and two children have yet to have a conversation with Marcus; he is non verbal, and only expresses himself in frustrated meltdowns of crying and screaming. The family helps Marcus with everything, from brushing his teeth to getting dressed and eating. And O’Loughlin knows that it’s taking a toll on the family. “I lot of times I just drop off my other children at their activities rather than staying with them because [Marcus] can’t handle loud places, and it’s always like a ticking time bomb with him; you wonder how much patience he is going to have when I deal with the other children’s activities,” she says.
For her, the latest numbers only highlight what she sees as a neglected aspect of autism – how families cope with the financial and emotional demands of living with a loved one who struggles, but is unable to communicate and understand our world. She runs a farm for autistic children and adults in Cary, North Carolina, and advocates for older people with autism who age out of state and federal services aimed at younger, school-aged children. “There are not enough services, there isn’t enough funding out there at all, and not enough focus from the government’s and society’s standpoint on the millions of kids who have already been diagnosed,” she says. “You don’t just outgrow autism, and we need to not just forget about the children in these studies.”
Marcus O'Loughlin, 8, tries to breathe through the mesh of a bouncy castle at the WakeMed Soccer Park during a birthday party for his brother, Brendan O'Loughlin, 6. Marcus has severe sensory issues, so the feeling of the mesh helped him focus and stay calm in an otherwise over-stimulating environment. Carolyn Van HoutenThe O'Loughlin family lives in suburban Cary, N.C., on a row of similarly built houses, but nothing is similar about them. "Marcus and his autism is all my children have really ever known," Erin O'Loughlin said. "Autism has always been a part of our lives so its just a part of who they are."Carolyn Van HoutenJordan O'Loughlin, 10, left, was enthusiastic about the story written in the Cary News on her mom's efforts to start 3 Irish Jewels Farm, an assisted living farm for adults with autism. Erin is still in the process of raising money, but she said, "I want to guarantee a future for Marcus and the farm is my way of doing that."
Carolyn Van HoutenThe O'Loughlin children play at the end of their street. Erin said, "I want them to always know I love them for who they are—for their very existence of being here. They don't need to be Marcus' caretaker. They don't need to be strong for us...They just need to be typical kids."Carolyn Van HoutenMarcus retreats into himself after Brendan, Jordan and Erin came over to throw confetti eggs, an Easter tradition with the family. Carolyn Van HoutenErin and Marcus share a moment at school before she leaves his classroom at Middle Creek Elementary in Apex, N.C. He always gets upset when she leaves him in the morning. Carolyn Van HoutenMarcus gives up trying to count sequentially in class. Middle Creek is a typical elementary school, but also offers autism-specific special education classrooms. These classrooms cater to the individualistic needs of autistic students and are prepared for those who cannot handle sensory stimulation.Carolyn Van HoutenMarcus reacts to his teacher during a one-on-one reading session.Carolyn Van HoutenMarcus spends much of his time at school watching children play outside. Carolyn Van HoutenErin explained that for Marcus's siblings, "having a special needs person in their lives is just natural...If they see another person with different special needs it doesn't even phase them...They may have a question or two for me later, but that factor of inhibition and fear is simply not there and its a beautiful thing."Carolyn Van HoutenErin checks on Marcus as Brendan and Jordan pick out a movie.Carolyn Van HoutenBrendan has precisely lined up toy cars up on the side of the bathtub since he was young. It made his parents nervous because Marcus had the same habit at the time he was diagnosed with autism. Repetitive, obsessive behavior is a classic sign of autism, but Brendan was merely imitating his brother.Carolyn Van HoutenErin said, "I often try to think what it must be like in his little brain and I envision fireworks, just fireworks going off—I don’t know what its like in there, but it must be like living with constant noises and sounds and explosions going off all the time."Carolyn Van HoutenErin playfully wiggles one of Marcus' toes after helping him put his pajamas on for bed. Marcus very rarely makes eye contact with anyone, including Erin, so when he does it is a treasured moment.Carolyn Van Houten“At the end of the day children with autism are not given to strong special people," Erin said. "We are made strong and we are made special by having to raise that child with special needs, and, yes, we are very often given more than we can handle."Carolyn Van Houten"When your child is born you have all of these dreams and expectations for what that child may or may not become," Erin said, "but with a diagnosis like autism you have to create new dreams."Carolyn Van Houten
