This column first ran in the July 2016 issue of The OARacle. We invite you to read its evergreen message and apply the writers’ suggestions to your situation.
There are few virtues more important than independence. Universally, nations and their citizens strive for independence. Teenagers seek independence from their parents. Small children tell their parents, “I do it.” Research tells us that independence is fundamental for success, boosts confidence, reduces over-reliance on others, promotes happiness, increases a sense of accomplishment, and promotes better decision-making. Independence is important to function effectively in the world.
As those who support, care for, and love individuals on the spectrum, we are often mired in day-to-day issues without enough time to address them:
- Jon has to be on the bus in 15 minutes and he hasn’t gotten dressed.
- Yulia hasn’t packed her lunch for her day at the beach with her provider and a friend who are parked in the driveway.
- Marco can’t find his favorite red shirt and if someone does not react quickly, he will have a meltdown.
We want to be helpful so, in the landslide of situations like these, we often “do for” the individual on the spectrum because of time constraints and their immediate lack of skills. Doing for is easier and keeps everyone calm.
Being helpful enables us to survive those moments, but is doing for the right thing to do? In the short run, absolutely. Action is needed quickly. In the long run, though, it may not be the best thing for the caretaker or the person on the spectrum.
The definition of independence is “freedom from outside control and support.” That is what we need to aim for, difficult though it may be. It all starts with a belief system. We must believe that:
- Individuals with ASD can be independent. Our actions, expectations, and assumptions all need to communicate this to the person on the spectrum.
- Independence is a basic human right. Everyone, including individuals on the spectrum, should have the ability to make choices and have a voice in everything they do.
- Our goal is to be expendable. We want to work ourselves out of a job. We are seeking the “I can do it by myself” skills and attitude on the part of the person with ASD.
- The skills that individuals with ASD use daily are the important ones to address. We need to target skills that foster an individual acting on their own. Skills such as getting dressed, getting to work, asking a peer to play, or following a schedule to complete a task are essential.
To turn belief into reality, we need to have the correct system of action. We don’t “do for” the individual with autism, we teach and support, as necessary. We ask ourselves, “How can I work myself out of the activity?” and “What supports need to be in place to foster independence?”
The long-term goal is to have an empowered individual on the spectrum who knows what they need and want and has the ability (with supports, as necessary) to access those needs and desires. It is our “job,” if you will, to foster the “I can do it” attitude in the individual on the autism spectrum. This is independence.
Brenda Smith Myles Ph.D., is a researcher, consultant, and author of many books on autism spectrum disorder. She has made over 3,000 presentations all over the world and has written more than 250 articles and books on autism spectrum disorder, including Excelling with Autism: Obtaining Critical Mass Using Deliberate Practice; High-Functioning Autism and Difficult Moments: Practical Solutions for Reducing Meltdowns; and Asperger Syndrome and Adolescence: Practical Solutions for School Success, the winner of the Autism Society of America’s outstanding literary work. Among other volunteer positions, she was a member of OAR’s Scientific Council for 16 years, from 2002 to 2018.
Amy Bixler Coffin, M.S., is program director of the Autism Center at OCALI. She coordinates and provides regional and statewide professional development for districts, families, and organizations. Coffin has presented at state, national, and international conferences, contributed to several articles and book chapters, and has authored a book on supporting individuals with ASD in the community.