Building an independent life is a self-defined and self-determined process. Independence looks different for everyone and will be informed by each individual’s lived experiences, neurotype, culture, age, sexuality, gender, race and ethnicity. There is no universal definition of independence, but professionals can consider this roadmap a tool to help their autistic clients explore, build, and define their own version of independence.
1. Reflect on how you define independence.
As professionals working with the autistic community, we can run the risk of implicitly imposing our beliefs on those with whom we work. How do you define independence for yourself? How was it defined when you were growing up? Begin by intentionally reflecting on your own vision and definition of independence before supporting this journey with your clients. Notice times throughout your work with them where you may have imposed your own view instead of eliciting and validating your client’s view.
2. Understand how your client defines independence.
Together, explore how your client defines independence. Meet your client where they are and honor their present definition. Your client may change or refine their definition over the course of your working relationship with them.
3. Introduce and normalize interdependence.
I can remember supporting a young man who had recently enrolled in a local community college and started a new job. The demands of both were overwhelming. He grew concerned about his grades and had little internal resources left after classes to navigate the demands of his job. He kept much of this to himself, feeling that he “should be able to do it on his own at this point,” until his job and academic standing at college were in jeopardy. After sharing with a couple trusted professionals the challenges he had been navigating, he crafted a disability disclosure statement for his boss, and scheduled recurring tutoring sessions with his teacher. Processing this after the fact, he expressed disappointment in not being able to “handle it all.” For him, that was what it meant to be a 22-year-old working and going to school. But approaching young adulthood with these new supports alleviated the daily stress and relentless anxiety he had been experiencing.
For many of the youth and young adults I worked with, their initial definition of independence was the same: you have to do everything by yourself. When I’ve heard this, I would often chuckle that this would mean I myself had yet to achieve independence. I explained how I relied heavily on individual support strategies and the help of a few trusted people in my life. Hearing this often surprised the young person in my office and they would respond in disbelief, “But you’re an adult!” This would offer me a window to introduce a term that I found better suited to my observation of what it meant to be an adult: interdependence. This was often their first introduction to the term and usually led to building a world cloud for this term on my whiteboard. (I welcome any excuse to use my whiteboard!) By the end of the conversation, I would often ask which term better defined the type of life they envisioned for themselves. More often than not, they chose interdependence, and I would see a visible shift in the young person sitting across from me. Their shoulders would relax and their eyes would widen at the possibility of relinquishing some of the incredible pressure they were carrying trying to live up to this picture of independence in their mind.
Whether managing the demands of school and work, or day-to-day responsibilities, like laundry and cooking, find opportunities to explore and normalize the types of assistance and support folks use to manage their everyday lives. From apps and visual reminders to calling a trusted family member or friend for help, explore how an interdependent mindset can actually facilitate greater autonomy and a better quality of life.
4. Balance self-acceptance and empowerment with skill development.
When I connect with professionals during training and consultations, one of the common concerns professionals raise is how to support skill development without encouraging their autistic clients to “look more neurotypical.” Professionals express deep concerns that the training they received encourages masking, disempowering neurodiversity, and maintaining stigma. Deeper awareness of the negative outcomes of these clinicals approaches has led to a surge of energy from professionals committed to creating neurodiversity affirming and culturally responsive practices.
When thinking about addressing these concerns and the skills critical to building a person’s self-determined independent life, self-understanding and self-advocacy are our key shared goals. Honing and practicing these skills never ends. Professionals can help foster development in each of these areas by conveying the following:
- Self-understanding is a lifelong discovery process. Interests, passions, support needs, triggers, what feels replenishing and what elicits joy will be ever-evolving throughout the course of your life. Not only will support needs change, but they could change from one day to the next, and sometimes hour-to-hour. Knowing how to check-in with ourselves – noticing, for example, when we have energy or when our bodies are tense or thoughts are running on an endless, exhausting negative loop – is the first step towards knowing which option is best for us in any given moment: doing alone, doing with, or having done for. One day you submit a job application sitting in our kitchen. The next week, you review job posting in a meeting with your vocational counselor, and the following month you ask your vocational counselor to send you a list of well-matched job openings. Doing alone, doing with, and having done for are all valid options and none of them negate independence. Be flexible in the ways in which you help clients learn these techniques. Some clients may prefer visual tools, videos, graphic organizers, written summaries (or amazingly drawn world clouds on a whiteboard). Adjust your approach to teaching and learning depending on your client’s style.
- Self-advocacy follows behind self-understanding. Recognizing your support needs is an important first step towards advocating for those needs. Asking for support from your boss, your professor, your doctor, coach or therapist can lead to getting those support needs met. Unfortunately, self-advocacy comes with risks. For many autistic folks, their needs are consistently denied and dismissed.
In addition to weighing the pro’s and con’s of self-advocacy with your clients, it’s critical to recognize how access to resources, stigma, ableism, racism, sexism may all impact your client’s ability to have their support needs met. Needed resources may not exist, have significant financial barriers, or are inaccessible.
Helping to foster skills such as self-understanding and self-advocacy is an important component of our work as professionals, but our work does not end there. We must also advocate for systems change for our clients, as well, whether that be at a meeting with your client’s school team, involvement in your local government, or providing supporting documents for disability services applications.