Monday, March 17, 2014

Living With an Autistic Adult

Taking care of a brother can be both challenging and rewarding.

My older brother (I’m not going to mention his name, since he is easily embarrassed) has difficulty answering the question, “Paper or plastic?” at the checkout line. He stops and thinks about it. This isn't a question with high stakes, nor will the world end based on the next words that come out of his mouth, but it does require him to change gears and consider the matter seriously. Up until that moment, he was in a semi-day-dream state, reliving the adventures of a powerful wizard in a far-away land, Coming back to the “real” world is almost traumatizing for my brother, even for the few moments it takes to answer the simplest of questions.

Since I usually shop with him, I quickly intervene. “Plastic, please!” I then smile at the check-out clerk and bagger, and maybe tell a joke to lighten the mood. My brother nods as though he were just about to say the same thing, and then goes back to the world inside his head.

Autism Awareness ribbon
Autism Awareness ribbon
My older brother has ASD, or Autism Spectrum Disorder. He is relatively high-functioning, which means he has many of the symptoms in the autistic spectrum, but still manages to hold down a good job. In social situations where he has to talk to strangers, such as at the supermarket, he is typically hesitant and unsure of what to say. Even when talking to people he knows well, there is always a distinct pause before he speaks.

The first symptom of the spectrum (of the parts that apply to my brother) is defined as:

“Verbal communication problems. Autistic adults may find it challenging to make their needs known to others or to start and maintain a conversation. Processing thoughts into spoken language may be very challenging” (Miller-Wilson article on love to know).

Most people have one or two of these symptoms without being autistic. I have a couple of them to a mild degree, but it’s the normal difficulties that most other people have. In my family I am considered an extrovert, simply because I can speak in public without turning into a pile of mush. It is only when these symptoms interfere with one’s ability to function in society that you are called truly autistic.

A case could be made that autistics are important to our modern world. Many scientists and engineers are adult autistics, not to mention artists and specialists in a variety of fields. How many great inventions would we be lacking? How many scientific achievements would be left undiscovered? How many works of art, architecture, mathematics, philosophy, or music would exist without the quirky social outcasts laboring alone and friendless in self-imposed isolation? Frankly, I think we are lucky to have them.

My brother is two weeks short of one year older than I, and we are both well into middle-age, yet I ended up taking care of him on and off for the past twelve years. I do the cooking and cleaning, keep the clutter from becoming unmanageable, and drive the car that we both own. This brings me to the next symptom in the spectrum:

“Sensory Processing Disorder. Many people with autism experience extreme over- or under-sensitivity to stimuli, known as sensory processing disorder or sensory integration dysfunction” .

He stopped driving more than twenty years ago after a series of accidents convinced him that it was too dangerous. The sensory overload and tendency to be distracted by his own thoughts has always made paying attention to the road problematic for him. He has since become a dedicated bus rider, and was happy that his work agreed to pay for his monthly bus pass. He works for the government as an engineering technician, where they don’t care how often he showers (twice a week, Sunday and Wednesday) or whether or not he shaves or gets a haircut.

At the same time, he needs a housekeeper to clean up after him, or the stacks of newspapers, magazines, and mail (including important bills that never get opened) would fill every available space and overwhelm him. Cat food cans would pile up and spill off the counter to scatter over the floor. So long as there is a path from his bedroom to the bathroom to the kitchen and then to his computer in the corner of the living room, he doesn't see anything wrong.

That was the state of his little two-bedroom apartment when I first moved in with him in 2002. It took a few days of hard work to find the floor, and much of the cleaning continues to be an ongoing project for me.

“Need for Routine. For autistic individuals of any age, there are a lot of unknowns in the world. Many social and communication skills others take for granted are mysterious to those on the spectrum. One way to provide comfort and predictability is to rely on routines”.

My brother always eats the same foods, and the list of things he is willing to consume is very short. Hamburger Helper or Rice-A-Roni with some browned ground beef (no onions or peppers added) a side dish of canned corn or green beans, and sometimes a dollop of cottage cheese. All neatly arranged on his plate (never mixed together) and then eaten in order, along with a glass of Kool-Ade, as long as it isn't  grape. For breakfast he has a bowl of Special K on the weekends, but on work days he settles for a glass of Carnation Instant Breakfast, chocolate flavor. For lunch he packs a Banquet TV Dinner, but only the kind that have corn or green beans as a vegetable.

He gets upset at anything that disrupts his routine, and is quick to anger over the most innocent comment. He never really gets over it. However, sustaining rage is also stressful, so he returns to calm composure as quickly as he left it.

“Few Friendships or Relationships. Forming close relationships can be challenging for adults on the autism spectrum. Idiosyncratic behaviors and language limitations can severely affect these individuals' ability to form friendships or romantic interactions”.

There are no friends coming over, and no romantic entanglements in his life. He has never been able to hold a conversation with a member of the opposite sex long enough to form a casual friendship, much less go on a date. He has never had a sexual relationship with anyone – it was a question for a long time among family members whether or not he was attracted to men or women. He insists he is not gay, but by all the evidence we can see he seems to be completely asexual.

“Non-verbal Communication Challenges and Lack of empathy or Shared Perspective. Understanding where other people are coming from can be extremely difficult. Many individuals with autism struggle to understand the perspectives of others, and this can lead to a lack of empathy. It also makes it difficult for autistic adults to share another person's interest in a topic".

In other words, people are just too complicated for him. He is not entirely happy with my living in his space, but recognizes the mutual benefit and sometimes seems to enjoy the company. Whenever my friends come over, he quickly retreats to his room and closes the door.

“Preoccupation with Certain Items or Topics. One hallmark of adult autism is limited interests. Many autistic adults are extremely knowledgeable about certain topics. This hyper-focus on a particular area of interest can be extremely enjoyable for the individual, but it can present major challenges as well”.

I am used to my brother’s quirks. I also realize that there are others like him. His social life consists of monthly games of Dungeons and Dragons, and the occasional road trip to a gaming convention. I am always designated driver, of course, which gives me plenty of opportunities to interact with the socially impaired.

It’s interesting to observe social activities for an entire group of people that have trouble making eye contact or small talk. They have a different set of rules than the rest of us. The D&D game is a controlled social activity with (mostly) clear rules that allow players to become another person in another world, a world that most of them are already living in, at least in their minds. It’s familiar, and whatever awkwardness they have in our world is unimportant. At conventions, lengthy debates spontaneously erupt over the number of meals a hobbit will eat in a day, or the best spell to bring to the Nine Hells, or whether or not Hermione Granger should have picked Harry over Ron. They know these fantasy worlds far better than the one they live in the rest of the year. This is a comfortable place for them. A sanctuary, of sorts.

I lack the intensity necessary to participate in most of these discussions, but I have learned to be patient and listen to my brother ramble on about his 19th level elven mage without yawning. He gets a certain light in his eyes when he talks about the object of his focus – the world he loves and his unique place in it. This magical realm occupies him completely, leaving little room for anything as mundane as the daily concerns of reality to hold his attention.

He is smarter than me in so many ways – he is a genius at mathematics and puzzle-solving. I was always the one who was good with words – it feels right for me to take care of the things he is not as good at doing for himself. I get to deal with this world, so he can spend more time in his.

It just seems fair.

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