Jacob’s Story Begins
A Fictional Character
Jacob is a fictional character and is not based on anyone living or dead. His story appeared in the first edition of my book, Independent Living with Autism: Your Roadmap to Success. If you notice similarities to anyone you know, it’s just a coincidence. Many people share experiences like the ones I wrote for Jacob. Currently, I am updating and rewriting this early book, which is now book 1 in the Adulting While Autistic series. The new title for this book will be, Independent Living While Autistic: Your Roadmap to Success. My goal for this revision is to bring it up to date, and to make it even more neurodiversity-affirming. The longer we live, the more we learn, and as Maya Angelou wrote, “Do the best you can until you know better. Then when you know better, do better.” My goal is to do better. The revised book will have a new character, Daisy, who you may have met in Relating While Autistic and who also appears in Parenting While Autistic. By including her in the revision of this first book in the series, allowing us to learn more about her back story, I had to make the tough choice to leave Jacob out. Rather than lose him altogether, though, I’ll be re-telling his story through blog posts and in my newsletter, NeuroDiversity News. I hope you like reading about fictional Jacob as much as I enjoyed creating him and his story. As always, I’d love to hear from you if you have any comments or questions.
Jacob, a high school senior, just had his eighteenth birthday. He was diagnosed with what they called “high functioning” autism at age four and has had an individualized education program (IEP) in school since then. He lives with his parents and attends his local high school.
Side Note about Functioning Labels
Terms like “high functioning” and “low functioning” are neither useful nor accurate, and should be avoided. People who are labeled “high functioning” are often denied services because of a mis-perception that they need nothing. People who are labeled “low functioning” are often denied a voice or the opportunity to self-advocate because of the belief that they are unable to make decisions about their own lives. In fact, most autistic adults have days, or moments within days, when they are better able to “function” as perceived by others (which may be masking) and other times when sensory or social stressors reduce their ability to mask or to cope with experiences that they may have had no problem with on another day. Jacob’s school called him “high functioning” because he used spoken words and he responded to tasks on an IQ test in the way his school expected him to.
Preschool through first grade he was in a small special day class (SDC) with other children who had autism and other learning disabilities. During the rest of his elementary school years, he spent most of his days in general education classes and was pulled out part of every day to receive resource specialist program (RSP) services and social skills training. Since middle school, his education has been almost entirely in general education courses with minimal support services. He is proud to be on track to graduate with a diploma rather than a special education “certificate of completion.” He only needs to go to school half days this year because he has enough credits, but he’s not sure what to do with his life after he graduates.
Jacob loves video games and watching cartoons on television, but the afternoons are long while his parents are at work all day and he has nothing in particular to occupy himself with. He’s bored and feels “up in the air,” but he doesn’t know what to do. The students he goes to school with are not really close friends, he realizes, but merely acquaintances. He never sees them outside of school. As for his future, Jacob would like to graduate and move into an apartment where friends could hang out. He would like to have a job he loves, a cool car, and a girlfriend. He wants solutions to get him started on his adult life.
In future posts I’ll share how Jacob goes about setting goals and working toward them to achieve a life he loves. Next time we’ll focus on Communication, and how Jacob and his parents learn to better understand each other and to be understood.