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.”

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