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.
Meet Jacob
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.
Jacob’s Education
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’s Interests
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.
That’s Jacob.
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.
Jacob’s Communication Story
Jacob, 18
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. This Communication story is from Chapter 2. If you notice similarities between Jacob and anyone you know, it’s just a coincidence.
Stressful Talk
When Jacob started on half-days at school, his parents asked him to get a part-time job. Every day when Jacob’s father got home from work, he asked Jacob questions, such as, “Do you have any jobs lined up yet?” “Why not?” “What are you doing about it?” “Where have you applied?” He also made comments such as, “You’ll be out of school soon. You can’t waste your life playing games all day. You’re not a kid anymore, you need to start pulling your weight.”
The more questions he asked, and the more critical remarks he made, the more anxious Jacob felt. After a few questions the pressure got to be too much, until he couldn’t think of what to say. He usually ended up yelling at his father to “get off my back!” and shut himself up in his room.
Argumentative Cycle
Jacob knew that this argumentative cycle wasn’t good for his relationship with his dad, and it wasn’t helping him, either. Every negative comment or question seemed to fill up his brain with numbing fear so that he couldn’t respond calmly. When he retreated to his room, he played video games to help relieve his stress, even though that only seemed to support his father’s position about “wasting his life on video games.” Robert needed to find a way to communicate with his father to stop the toxic pattern that was not working for either one of them.
Don’t Shout – Write it Out
When Jacob gets stressed and anxious at school, his teachers write him a note, and let him reply in writing. They know that when things get to be too much, his verbal communication systems shut down. When that happens, he can’t talk, so it’s easier for him to communicate in writing. It worked at school, so why not at home? Jacob decided to try writing to his dad instead of trying to tell him how he felt. He didn’t want to go off and wind up yelling at his father day after day.
Through His Dad’s Eyes
Before he started writing, Jacob tried to see things from his father’s point of view. What did his father really want? Was he trying to stress Jacob out and purposefully push him over the edge into escape mode? Because that’s what kept happening. But that couldn’t be his dad’s true motivation, could it? It wasn’t in character with the loving father he’d grown up with. Maybe his dad was actually trying to help him, but was just really bad at it.
The Benefit of the Doubt
Jacob decided to give his father the benefit of the doubt. His anxiety about Jacob’s future was probably behind all the questions that were so overwhelming. Maybe this was his dad’s version of wanting to help him succeed. It was backfiring, but this perspective helped Jacob to interpret the third degree questioning as a profession of paternal love.
The Letter
After looking at their communication struggles through his dad’s eyes and giving him the benefit of the doubt, Jacob knew he wanted to have a better relationship with him. He knew if he tried to talk it out, he might end up storming off to his room again, and he wanted to avoid that. Instead of talking, he decided to write his father a letter:
Dear Dad, I know you love and worry about me, and I want you to know that I am worried, too. I understand I can’t spend the rest of my life living here and playing video games. I do want to get a job and get on with my life. It is painful for me to admit that I don’t know what to do. When you ask me questions about my future, I freeze up, panic, and run away to hide in my video games. I know you ask me these questions because you love me, but it’s not helping.
Here is what I already do to try to get an after-school job: I search for jobs online and fill out applications online. I never hear back from any of them. I don’t know what else I can do. I worry that I will never find a job. I worry that if I do get called in, I will make a mess of the interview and no one will hire me. I worry that I will be homeless one day. All of these worries fill up my brain and I can’t think, so I play video games. I win at video games, but I suck at life.
Instead of asking me questions when you get home from work, can you help me figure out what I can do next? I’m sorry for this long note but I find it difficult to talk about it. I love you and Mom very much and I hate to be a burden to you.
Love, Jacob
Everything on the Table
Jacob poured it all out onto the paper, and put his feelings on the table. His father read it, shared it with Jacob’s mom, and then all three of them sat down to talk.
First his father apologized for not seeing how his questions affected Jacob. He said he’d try to change. Both parents assured him that they loved him and wanted the best for him, that he was not a burden, and that they would never kick him out to make him homeless. They agreed to help him with his job search, and his father said he’d look into to some possible connections he had at work. This helped Jacob relax about the future, which had terrified him. He felt encouraged that his father would help him with his job search.
Jacob’s Communication Solution
Writing down all of the difficult things he had to say, rather than trying to talk it out, helped Jacob gather his thoughts. He could take his time and state his ideas calmly, rather than reacting and going into escape mode when his dad tried to talk to him about the future. Writing a letter was the solution for Jacob’s communication challenge.
