Upon being asked to write this post, my initial thought was around the meaning of “persistence.” To me there are many ways that I think of “persistence,” which I will go in detail about in this post. I’m also given the exciting (yet challenging) task to think of this in the context of Autism acceptance. So, I’ll dive right in.
I first think of persistence as a noun that represents a consistent or prolonged state of ideas, skills, challenges, or problems. A persistence of certain ideas or a stereotype of folks in the Autism community that doesn’t typically match reality. The idea that ASD individuals are “savants,” like Dustin Hoffman’s character in Rain Man, has influenced the way we portray characters with ASD in the media. This creates a persistent idea that only people who demonstrate skills to the benefit of others are useful in society and prolongs another negative persistent idea. That we can only recognize certain characteristics of people with ASD, and often don’t consider the challenges that the ASD population faces on a daily basis. Much of this perception is due to the structural oppression created against people of different abilities and disabilities.
Going along with the latter idea, often times individuals with ASD don’t have a say in how to live their lives. This relates to another unhelpful persistent idea that people with ASD don’t have the ability to take care of themselves and will constantly need help for the rest of their lives. Many times, it’s everyone else but the person who has a say in decisions about their life (i.e. parents, teachers, health professionals, etc.). This feeds into the persistent idea that many parents/caregivers have to deal with – fear. If you care for someone with ASD, you may have re-occurring “what if?” scenarios that play in your head regularly. What if my child gets lost on their way to work? What if they get in trouble at work, and then get fired? What if I pass away and my child will be forced to live without me taking care of them? While these are concerns that must be figured out, it’s time to bring these concerns to life rather than keeping them as unhelpful thoughts, and develop solutions with your child.
During my time as a Direct Support Professional, too often I see families and other professionals in the field deny individuals the opportunity to demonstrate their current abilities, as well as deny opportunities to learn from mistakes or naturally occurring problems. Part of my job was to not only prepare my clients for meaningful employment and community integration, but also to prove to those people (and those in our community) that my clients are capable of so much. My clients are capable of communication, whether it’s verbal, through AC devices, or simply via email and texting. When given access to the right tools, my clients can advocate for themselves and direct their schedules each day. With constant practice, my clients can develop the skills that are often taken for granted in the workplace, such as time management, prioritizing tasks, and conflict resolution amongst a team. Across all of the hurdles we had to jump, my organization’s belief that people with ASD are capable of anything, along with their confidence and determination, has led to many jobs obtained (and maintained!). It’s also led to more acceptance and integration in our communities.
To circle back to the primary topic of “persistence,” I also think of the term as an action, or a result of action. Being persistent with something can bring about a variety of outcomes that take on different appearances. In my experience, persistence can lead to my client being able to make choices without me prompting them. It can take the form of another client, grinning ear to ear, as they accepted their first paycheck. These are just based on my experiences, but we can also look at the large scope of persistence in relation to the ASD community. Persistence can also take the form of additional funding for services such as OT, SLP, supported employment, and community development. These services allow for adults with ASD to continually use the skills they’ve acquired throughout their lives in school and home. Persistence can also take the form of social policies that liberate the ASD population, rather than oppress them. Such policies may ensure that there is proper funding for human service providers, and allow Direct Support Professionals to be paid higher wages to help better support themselves and their families.
Honestly Autism Day is an extraordinary event that gives self-advocates and families the opportunity to learn, share their experiences, and plan for the future. I hope whoever reads this recognizes that Honestly Autism Day is not the only day to think about these issues. If you are a self-advocate, family member of an ASD individual, professional worker in the field, or just someone who wants to make a difference, I encourage you to consider actions that you can take in order to make the changes happen. One simple action you can do now is to observe more closely for opportunities of learning and teaching with your loved ones. For example, have them plan to meet their friends in the community, rather than arranging the meet ups yourself. This can teach the individual how to plan ahead, develop a schedule, and how to utilize transportation resources in the community, among other skills. Another thing you could do is become involved in the disability rights movement by researching the history and current events, or being extra critical of politicians and policies that directly affect this population. Check out this article from Time that was published last year discussing the disability rights movement in relation to the Affordable Care Act. I would also recommend you to check the Maryland General Assembly website for recent policies being introduced into the House and Senate, as well as detailed analyses of the policies, such as the “Fight for Fifteen” legislation that will increase the minimum wage up to $15.00 by 2023. These are just a few actions that can further help to establish a safe, accepting, and evolutionary world that embraces neurodiversity.
Katelyn Szymanski is the Employment Coordinator for Itineris Baltimore, which serves adults on the Autism Spectrum who are working towards paid employment and meaningful community integration. She is pursuing her Master’s in Social Work at the University of Maryland, Baltimore. Katelyn is also a self-advocate on the Autism Spectrum, and hopes to use her personal and professional experience to teach others the importance of accepting and embracing people of all abilities and disabilities.