Aspergers And Independence

My daughter is 21 and still lives with me. It’s not a problem for me, but sometimes it is for others. There is the expectation that because she has entered her 20s, she needs to get out and find her independence. Keep in mind that my generation is really the only generation that lived independently from an early age. My dad had his grandparents live with him, which wasn’t uncommon for the day. And now more families are returning to living together for financial or health reasons.

For those of you who don’t know Birdie, she has high functioning Autism. As I have said in previous blogs, I often hear, “But she seems so normal.” She works 36 hours a week as a receptionist and is exceptional at it. From all outward appearances, she seems to have navigated her challenges very well. That just speaks to the mastery of her outward appearances.

So what’s the problem with her living independently? After all, I am not going to be around forever? I want to be clear here, Birdie does own her own car, pays for her own phone, pays her own insurance, gas, half of the utilities, rent, and groceries. She puts 90% of the rest in savings. She is a very responsible and in many ways independent. Still, there are many reasons she still lives at home.

If she lived on her own, I have no doubt she would be agoraphobic. She doesn’t really like people and social events are painful. More than likely she would rarely venture out. Because Birdie suffers from clinical depression, her black hole would swallow her whole.

Even though she doesn’t care for a lot of social interactions, too much time alone is too much time in her head and trust me, that is never a good thing. She unravels in her what she calls her “brokenness.” She is hostile in her self talk and is keenly aware of how not “normal” she is. The self-loathing is excruciating as her mother to hear and watch.

Birdie also needs to be touched. She needs to be hugged, stroked, her hand held, her head kissed. She doesn’t like to be touched by “strangers,” whether it is co-workers, fellow church parishioners, or her peers. By the time she gets home from work, she is touch starved. Part of her daily recovery from working in an office is being able to be held while she processes her day. If she lived alone this vital necessity would be absent.

Birdie also doesn’t like to cook. The processes of deciding what to cook, going to the store to get all the ingredients and preparing the meal are overwhelming. So more than likely you would find her eating the same meal over and over with little variation.

She would have difficulty taking care of her dog. Getting a dog was a big decision for Birdie. She has grown up with dogs. When our last dog passed, we thought about taking a break. However, for a kid without siblings and very few friends, she was desperate for a pal. The new puppy was going to be her very own dog. She would be entirely responsible for its care. With our previous dogs, I had always said, “Hey Bird, can you let the Lily out?” or “Murphy is ready for bed.” What we didn’t realize at the time is that Birdie is unable to read most dogs signals. Naturally as an adult I just automatically prompted her to tend to the dog’s needs if I was unavailable. Her inability to read signals became especially evident with her new dog, Pippin. What we take for granted in the relationships with our animals is a whole different ballgame for Birdie. She can’t interpret the barks, whines and ear positions. I translate Pippin’s signals constantly for her. When Birdie is left with her dog for any length of time, it can be distressing for both.

Birdie is very smart and she’s savvy enough to pay her bills promptly and tend to adult responsibilities. In that way, she is very independent. However, alone in an apartment she is unlikely to thrive.

I am aware there is another option; she could move in with her peers. Birdie’s version of hell is being trapped in a room with people who want to engage. This isn’t just an aversion; “she’ll just have to get over.” The very prospect of negotiating roomates makes her literally tremble in fear. She would be unable to confront her roommates if the music was too loud. The overstimulation of a party would send her into panic. The hundreds of micro negotiations roommates do every day would be overwhelming. For example (and I am really oversimplifying here) navigating space in the fridge, bathroom, closet, or kitchen cupboard space, splitting bills, who gets ready in the bathroom first in the morning, who uses the washing machine when, who empties the dishwasher, who cleans the house when, etc. Add to that the unexpected overnight guest (roommate’s boyfriend or girlfriend) she might encounter in kitchen or bathroom at night. For Birdie, the unpredictableness of it all would be too much.

Sure she might pick up a social skill or two, but missing social mores and not being able to read people’s cues might impede that experience. She is the awkward, “weird” girl in the room. More than likely she would barricade herself in her room and cry herself to sleep. It’s just too much stimulation, too much to navigate. Even hiding in her bedroom wouldn’t be safe enough space to get away from it all. She would feel like she did not have any control over her environment.

While she might be able to very, very carefully select a single roommate (if she just had one and you can’t imagine how painful that process would be) the relationship would still be too unpredictable for Birdie to cope with. It is one of the reasons she struggles with relationships in general. People are unpredictable, and unpredictability means her mind and body are in a constant state of fight or flight.

Birdie is an amazing human being full of perspective beyond her years. She is funny, honest, exceding clever, compassionate and kind. I hope one day she will meet someone who loves for who she is, and loves her enough to help her navigate the world around her. (I have no idea how that is going to happen, but I am hopeful!) But until then she might have to live at home a little longer.

Obviously our experience is not everyone’s experience but for those of you with similar expereinces, just know you are not alone.

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