This blog post is a little… Different from what I usually write and talk about because I’m sincerely and desperately looking for advice or anything that will help the situation I am in.
Last year I purchased a home and was thrilled to be moving into a space all my own thinking I’ll finally have the freedom that I’ve always sought for. But unfortunately the reality is that I live in a city that’s very expensive and to help with the high property tax situation I decided to rent out extra rooms that I had in my house. My sister told me she had a coworker (let’s call him “M”) that was looking for a place and would love to move-in as soon as possible. He lived with his parents in Texas at that time and so I didn’t have time to actually meet him in person, but I trusted my sister’s judgement and relied on the fact that she’s vouching for him.
It was a long way from home, but everything was planned as his parents drove him out with his stuff across Texas to California. They finally arrived on a weekend and everything was dropped off/moved in. All was dandy until my sister pulled me away, she wanted me to know something before we all started living together: M was autistic. But she reassured me that he was high functioning so it shouldn’t be too difficult. I believed her for a second, but can I just say how wrong she was.
Life with a high functioning autistic person is far from easy, it’s straight up hard. This is especially true because I’m a person with absolutely no patience for things. I like discipline and efficiency. When things go awry I tend to have a very short temper too. It is why unlike my sister, I am nowhere near doing a job in the medical field where I need to care for people and autism definitely is a spectrum disorder that needs special handling. I knew myself well enough and should’ve seen that it was going to be a long and arduous journey.
I learned that to M things like common sense and courtesy isn’t part of his thinking process coupled with the fact that he’s had a very sheltered life (due to his parents doing everything for him his entire life) he has zero sense in what it was like to live with strangers. He couldn’t pick-up on social cues so it was very hard for him to adapt to things. I realized that simple things like washing dishes, taking out the trash, hygiene, and keeping areas clean was a challenge to him that he didn’t understand. The first year drove me insane. He didn’t understand why I’d get upset when he left dishes in the sink for weeks or that he’d leave areas a mess then get mad at me for being upset at him. It’s my house so of course I had my ways of doing things. My methods were different (which were spelled out before he moved in) from the way his parents did things and that would upset him. Example: his family used the dishwasher everyday, but I only use it when we had parties to conserve water so for day-to-day dish we just hand-washed them. He didn’t like that I was upset that he wasn’t washing his dishes and insisted on using the dishwasher everyday. I told him “no”, it was a waste of water and energy for him to use the dishwasher to wash one bowl and one fork for his sake he threw a tantrum with the full-on door slamming and fuming. That situation definitely threw me off and angered me that he was slamming (my) doors for the next 24 hours. It suddenly felt like I was dealing with a 12 year old child. It annoyed me that he was throwing a tantrum at all over something so trivial. It was childish and dealing with children wasn’t an area of my expertise. It was hard when I had to take on the responsibility of taking care of him (cleaning after him, buying things he uses up, etc.). I never wanted to become a “mom” or “caretaker”, I just wanted a housemate, not a child to take care of.
It gets worse on the days when he doesn’t properly take his medications and that in itself is also a problem. He has a hard time managing his pill prescriptions to be refilled in a timely manner so we get a lot of bad days at home. The whole situation continuously gave me a headache and it still does to this day. I don’t know how to handle his situations because I don’t know how to deal with emotional roller coasters or just emotional people in general. I just wish people could take what I say and do objectively without being offended, think about the whole picture and the long run rather than the right now– but that’s just not how M is wired to work, ya know? I’ve tried my best with reading forums on how to handle living with HF autism and tried my best to adjust on my end because it’s a lot faster and more efficient for me to adapt to him rather than wait years for him to learn to change one thing at a time, but it’s still a vicious cycle. I’d talk to him about things he needs to do, it goes well for about a week then he goes back to his bad habits. The idea that I need to remind him to do things for the next few years seems insanely daunting.
Here’s what I’ve learned and trying to cope with as I quote a very correct list I found from verywellhealth.com
Fact: High Functioning Autism Is Very Challenging Every Day
Here are just a few of the issues that get between people on the high end of the autism spectrum and personal success and happiness:
- Extreme sensory issues. People at the higher end of the spectrum are just as susceptible as people in the middle or lower end of the spectrum to sensory dysfunctions. These include mild, moderate, or extreme sensitivity to noise, crowds, bright lights, strong tastes, smells, and touch. This means that a person who is bright, verbal, and capable may be unable to walk into a crowded restaurant, attend a movie, or cope with the sensory assaults associated with malls, stadiums, or other venues.
- Social “cluelessness.” What’s the difference between a civil greeting and a signal of romantic interest? How loud is too loud? When is okay to talk about your personal issues or interests? When is it important to stop doing what you enjoy in order to attend to another person’s needs? These are tough questions for anyone, but for a person on the high end of the autism spectrum they can become overwhelming obstacles to social connections, employment, and romance.
- Anxiety and depression. Anxiety, depression, and other mood disorders are more common among people with high functioning autism than they are among the general population. We don’t know whether the autism causes the mood disorders, or whether the disorders are the result of social rejection and frustration—but whatever their causes, mood disorders can be disabling in themselves.
- Lack of executive planning skills. Executive functioning describes the skills we use to organize and plan our lives. They allow typical adults to plan schedules in advance, notice that the shampoo is running low, or create and follow a timeline in order to complete a long-term project. Most people with high functioning autism have compromised executive functioning skills, making it very tough to plan and manage a household, cope with minor schedule changes at school or at work, and so forth.
- Emotional disregulation. Contrary to popular opinion, people with autism have plenty of emotions. In fact, people with autism can become far too emotional in the wrong situations. Imagine a 16-year-old bursting into tears because of a change in plans, or a grown woman melting down completely because her car won’t start. These are the types of issues that can arise for people with high functioning autism, who are capable of doing a great many things ONLY when the situation is predictable, and no obstacles arise.
- Difficulty with transitions and change. Lots of people have a hard time with change, but people with high functioning autism take the issue to a whole new level. Once a pattern is established and comfortable, people with autism (by and large) want to maintain that pattern forever. If a group of friends goes out on Wednesdays for nachos, the idea of going out on Thursdays for chicken wings can throw an autistic adult into a state of anxiety or even anger.
- Difficulty with following verbal communication. A person with high functioning autism may be more than capable of doing a task—but unable to follow the spoken instructions provided. In other words, if a policeman says “stay in your car and give me your license and registration,” the person with autism may process only “stay in your car,” or only “give me your license.” The same goes for instructions given, say, at a ballroom dance class, at the doctor’s office, or by a manager in an office setting. As you can imagine, this can cause any number of issues, ranging from serious problems with the police to inadvertent mistakes at work.
Which I can all vouch for as I’ve experienced and seen it all happen before. I know that he’s not happy living here and I hate that he’s miserable here because he wants me to treat him like everyone else, but when I do he gets upset at me and we end up disagreeing and fighting (back to the part where I’d tell him what he needs to do, he’d do it for a week then go back to his bad habits then I get exasperated and cycles back to us fighting). My sister says it’s because I don’t talk to him enough, but only because I don’t want to risk a tantrum episode. It’s wearing me out when I just want to come home and relax. I really want to suggest to him that he should move back home to people that know how to properly live around him. He’ll be happier living situations wise.
I know the key thing is that you have to adapt and that communication is key in situations like this, I’d understand in a family situation it’s easier to do that because you’re family and y’all love each other. But M’s not my friend or family, he’s just a renter to me and I don’t want to turn my whole life around for somebody I don’t even know. To be brutally honest, he wouldn’t have been someone I’d choose to live with if I had known beforehand. I don’t have time to sit down with him a make a list of chore schedules nor do I have the time to sugar coat everything I say, I don’t have the patience or rigor of a mother to care for someone with autism 24/7. I am exhausted and I need help.
Anyone have any ideas what I should do? 😦