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My typical 9-year-old, Luke, has a special condition: he knows he’s “typical.” He also knows his older brother, Chris, is autistic. There are times when that comes in handy. Chris doesn’t “borrow” Luke’s stuff. Chris doesn’t lie about things or stay up late with the lights on. There are also times when it’s a real bummer to have a brother with autism. Luke likes contact sports. He’s chatty. Luke would really like to be able to play with and hang out with his older brother.

A Quick Bit of History
Chris got his diagnosis when he was almost 6. That means Luke was 3. Prior to that diagnosis, Luke and I spent a LOT of time in the waiting rooms of Children’s Hospital, while Chris was in an Occupational Therapy (OT) or Speech Therapy session. We were all in the soup together from the start. We were always honest with both boys. Chris knew there was something different about his development, and so did Luke. We tried, though, not to single out one or the other.

Sometimes that’s easier than others. At 11, Chris still has an academic tutor. Luke doesn’t. Chris has always had a para at school. Luke is responsible for his own homework, his own jacket and lunchbox. And Luke has the added responsibility of keeping an eye out for his brother. With two years (eight inches and about 35 pounds) separating them, Luke feels like he has to watch over his older brother. That’s a heavy load for any kid.

Creating a Compassionate House
Luke has felt left out on occasion. He doesn’t have the adult support network that Chris does. Granted, he doesn’t need the same caliber of support, but he does need the same stuff we all need: compassion, contact, support, time. Some of those needs can be satisfied in the ways typical kids do things: Luke plays football and soccer. He has a couple of “best friends” at school he always hangs out with. But it takes more than that. Luke has to know it’s OK to go and hang out with his friends. For us, creating a compassionate home means leaving the door open for the people inside to get out sometimes.

The same way parents can slowly drive themselves crazy with the relentless demands of a special needs child, siblings can feel strangled in the web of support, guilt and dissatisfaction as well. As a younger brother, Luke naturally looks up to his older brother to model behavior, and when it comes to social interaction, Chris doesn’t know what he’s doing.

Luke makes friends easily, likes talking to people, enjoys sports, and fits in pretty much anywhere you put him. For Luke, modeling the solitary preferences of his brother leaves him feeling isolated and lonely. Sometimes he feels guilty that he comes so easily by the very qualities that mystify Chris. Why should it be so easy for him to make friends when his older brother can’t figure it out? It isn’t hard for him; why is it SO hard for Chris? It’s not fair. But what can he do? The same thing parents do if they want to stay healthy and useful: give ourselves permission to be ourselves sometimes. We all need to recharge. We can’t be available all the time. It’s not reasonable, and it’s not fair.

Luke is getting to an age when contact with Mom and Dad just isn’t sufficient. So we’re making an extra effort to help him understand that it’s OK to need other people, even if his older brother doesn’t express it the way you’d expect. Yes, Chris needs other people, too, but his is more a situation where Mom and Dad or teachers create social opportunities he can benefit from. Luke doesn’t need that intervention anymore. He has his own friends who, increasingly, like to do stuff without adults inventing the opportunity.

Being OK with Being Himself
Luke is becoming his own young man. He isn’t the same as his brother, and that’s OK because he’s not supposed to be the same. He is, however, supposed to be compassionate, patient and willing to meet his brother more than halfway sometimes. It’s much easier to be that kind of person if you get to get away from those expectations sometimes. Here are some things that work for Luke and could work for your child:

  • Ensure  your child understands his own needs. Give him permission to satisfy those needs without feeling guilty for abandoning his brother/sister or you, the parents, while he has a good time.
  • Help your child understand that the social contact he may find relaxing and rejuvenating may be excruciating and exhausting for someone with autism.
  • Encourage your child to develop as a friend, pupil, and teammate.
  • Allow your child to develop social relationships with people outside the four walls of home.

Speaking as a parent, when I get the chance to get out on a “Date Night” or go work out or just take a walk with my own thoughts, I return better able to re-engage and be useful to my kids and my husband. Same goes for Luke. He needs the chance to get out, so he can come back and be the kind of brother his brother needs, the kind of brother he can be proud to be.

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Kate Dran is a user experience analyst, professional writer, autism advocate and parent of 2 beautiful and perfect sons, one with autism, one developing typically. She founded Adaptive Solutions Analysis, LLC , a private consulting firm that provides usability assessments and user experience analysis for adaptive technologies that support the cognitive, sensory and motor development needs of K-12 students with autism. She believes that autism-friendly user experience is human-friendly user experience.