By Lydia Wayman
Since I wasn’t finally, formally, correctly diagnosed with autism a few weeks after turning 21, I didn’t grow up with special attention to non-academic skills. I was the eight-year-old with her nose buried in The Hobbit. So when I was told to clean up and didn’t follow through or had a meltdown over things my parents didn’t understand, it was seen as behavioral and not a sign that I didn’t know how to do or manage something.
Even now, like many autistic people, I have such a scattered skill set that most people have trouble reconciling my strengths and weaknesses as belonging to one person. If you meet me through my writing or in some quiet space where you ask me about autism, medical information, or cats, you will find it hard to believe I can’t cross streets or fill out forms. But if you find me in a large group, join me at the mall, or catch me when some plan has been changed, you’ll be shocked to hear that I’m a writer and that I’m living on my own in the community.
Daily living skills have been slow and painful to master. My parents and teachers didn’t understand that “clean up” was way too broad. I can’t “clean up,” but I can put away the clothes, throw away the papers, stack the books, and so forth. I needed to be taught each step of how to do chores and then practice with supervision. I’m now 28, and I’ve been living on my own for a year and a half with varying levels of support–about 25 hours a week during the day and a nurse here overnight for medical needs right now.
In the time I’ve been here, I’ve had things come up that I’ve added to a mental list of “real-life things that really do happen and really should be taught explicitly to young adults on the spectrum.” I want to share some of those things with you. I know that every person is different, so my list isn’t mean to be prescriptive… it’s meant to make you think about skills that seem obvious or simple to you but haven’t been so obvious to me! There is a lot more to independence than you may realize.
For example…
Is it safe to walk outside to get the mail in the dark?
If I plug something into the electrical socket and it doesn’t turn on… and then I smell something odd, should I worry?
What if a neighbor calls to say my package got left on his doorstep, and he wants to bring it over… if he’s an older man, is it safe to open my door to him?
What do I do if the toilet flushes normally but then the water doesn’t come back?
If I get a bill that lets me fill in my card number in the boxes, is that safe?
What’s the difference between the regular mail, UPS, and FedEx, and how do I know what to choose?
How do I know if a light bulb is burned out by looking at it?
If I answer a question and the person asks me to clarify, how do I know how to change my words around?
What if I call and can’t understand the person’s accent?
How do I kill a stink bug… without making it stink?
There are other helpful strategies, too, such as lists, color coding, visual schedules, and the benefit of establishing a routine for some tasks. I’ve heard people say that someone as capable or verbal or old as me should not and does not need those supports. But it’s not just a matter of remembering the steps of a task–it’s remembering where I am in a process, getting my body to cooperate to carry out the steps, and staying on track when something in the middle goes all wrong. Typical people use similar strategies all the time for their weaknesses–phone books, calendars–but I can recall numbers and long-ago dates in an instant. But laundry? Writing checks? Those skills took a lot of hard work, and they still require careful thought and effort.
The level of independence I have in my life is still far below my peers. But I’ve worked so hard to get here, and I really enjoy my apartment and how I spend my days. There are kids and young adults working just as hard with the hope of being in their own apartment some day… I think their schools and programs owe it to them to look at daily living from the perspective of autistic adults who are doing it now so those young people really are prepared for the stink bugs and empty toilet bowls of good old daily life.
You’re so right, Lydia, I sure could have used way more basic info at an early age. I was afraid to ask because, as you point out, if you appear to be intelligent & competent in some ways then you are judged as being able to figure things out for yourself. I’ve also come to realize that no one is completely independent, I rely on friends & neighbors for things that help me maintain my house & property & they rely on me too. I used to take great pride in being so independent, now I take pride in being a contributing part of a community.
Hi Aleda! I have used similar examples… yes, I need help with my finances (a lot of help), but my totally-typical older sister asks our mom to watch the kids and for gardening advice all the time. She has gardeners come over–I have support staff to help me where I need it. My BS is in elementary ed, but I hit a brick wall of sensory onslaught with student teaching, so I don’t teach but have a whole lot of child development retained… sometimes my sister asks me about parenting stuff! We all need help. I really, really like your last sentence–it should be a quote on classroom walls! When parents mention independence, I always say that one of the most crucial skills is knowing when to ask for help, who to ask, and what words to use. Sometimes the best decision an independent person can make is to ask for help!