Undiagnosed

During our D.C. stop we met with a 45 year old woman in a cute café outside the city. What was especially interesting about her family’s story is that her brother has remained undiagnosed despite a long list of social and language related difficulties. Granted, her brother is in his late 40s now and diagnosing is different now than it was then, but she and her family have dealt with him his whole life without a diagnosis or the medical “advantages” that go along with having a name for the problem. She speculates that her brother probably has some form of Asperger’s, although she thinks he wouldn’t have been put on the Autistic Spectrum when he was growing up because he didn’t appear severe enough, especially since Asperger's was added to the spectrum only recently. She described her brother for us, explaining that he lacks many social and hygienic skills, suffers from speech and language issues, and currently works the night shift stacking shelves at an Office Depot equivalent. She said he never really had any friends but he is currently married to his second wife. He has three children. “If you want to call that independent, you can, because he’s not in a group home,” she told us, although it was clear that she did not agree. We asked her about her relationship with him. She certainly had a lot to say but, just like many other siblings we have spoken with, she described them as personal issues that she, herself, was dealing with, not the two of them. She depicted a lot of anger towards him because he has put so much stress on her aging parents, one of whom still works 2 jobs even though he is in his seventies. “There are definitely times when he has learned to manipulate my parents.. that just infuriates me.” Yet despite her anger, she, like many other sibs, often simply suppresses her emotions when she's around him. She let us know that we would not be able to tell that she felt this way if we were to see her with her brother. She struggles with the fact that her parents support him financially because she doesn’t support providing for him at his every whim. She once brought her frustrations up with her dad who became very aggravated with her. “Sorry,” she said “these are my emotions.” She described how, when she is one of his primary caretakers after her parents' passing, she is going to handle his financial support in a much more regimented manner. While she certainly respects and cares deeply for her parents, it's clear that a portion of her anger seems to have come from her disagreements with how they have consistently supported and enabled her brother's lifestyle.

She said she can essentially only talk to her sister about her brother. “We literally felt like we were the only ones who could really understand each other. Because it’s so hard when you’re trying to describe [him] to someone because he doesn’t have a diagnosis.” She told us that, “even good friends are good listeners but unless they have a sibling, they really don’t get it…they can’t really empathize and they don’t really know what to say.” She has wrestled with how and to whom to unroll her brother’s story. She, along with many others that we have spoken with, try to understand “how much is he really able to comprehend versus how much of it is his disability” and she yearns to speak with others about their experiences as sibs. She talked about wanting to know about services she could get for her brother and also emotional support she could get for herself. “It’s one thing online, it’s great, but person to person is even better”. She was definitely a reminder to us of the need for increased visibility around sibling issues as well as access to high-quality and yet affordable support services for siblings.

We loved speaking with her about her life and her brother and her frustrations with being a sib. She really proved to us, once again, how important sibs’ stories are, for the sibs themselves, for their peers, and for other sibs around them.

Claire and Ellie