About this new column Carley writes, “Being (1) a brash New Yorker, (2) a blunt person with autism/Asperger’s, and (3) a non-drinker, has made for an interesting move to Green Bay, Wisconsin. It’s time for me to start telling their stories, even if it’s through the context of educating me.” To subscribe to his columns, or to suggest story ideas for this particular column, please see the information on Michael John at the end of today’s story.
by Michael John Carley
He doesn’t want me to take his picture.
Even at the age of 42, Jakob Robinson is afraid of “being judged” if I use his photograph for this article. “I know I’m just being paranoid,” he explains.
But knowing doesn’t make the anxiety go away.
We three have met for coffee. Myself, Jakob, and his mom, Kathi Wunderlich. Kathi (pictured) is a story herself; having started one of the two existing support groups for adults on the spectrum in the greater Green Bay area. She and her group, ASNEW (Adult Asperger Support Network), are a perfect companion to (last column’s subject) Jody Morton, and Jody’s CARE Café. While Jody’s group is for young adults on the spectrum, Kathi’s group is populated by a mostly older crowd.
Kathi lets her son talk at this coffee, adding only information, later, that she feels has been left out of Jakob’s narrative. But this occurs frequently, as Jakob is so hard on himself; speaking of his diagnostic realities as if they were personal faults that he “could have done better” at. Only in the rare moment that he is willing to be critical of others does he speak with a glimmer of confidence:
“Mental issues are not as understood here. They just aren’t very sympathetic to them. Around here you just don’t have a lot of people that have an open mind.”
Jakob now lives on disability, has had very infrequent employment, and has never had a girlfriend. Though Jakob’s anxiety is through the roof, and always has been (to the point where it might be more appropriate to call it “trauma”), he didn’t get his autism diagnosis until about 5 years ago. In addition to not wanting his photo taken, Jakob Robinson is not his real name. He preferred a pseudonym.
His school years at Preble (Green Bay Public School District) drew concerns from staff, but only for inconsistent academics. He would go days without saying a word to anyone, and spent his years there almost entirely friendless. This only intensified the anxiety that, in addition to social misery, would also influence the academic inconsistency. Lucky to have a friend in Omaha, Nebraska, Jakob actually moved there for his Senior year, just so that he could be emotionally regulated enough to graduate.
His college experience was sporadic. A stint at UW-Green Bay, followed by UW-Madison, which didn’t work out because he “just stayed in my room,” and then concluding back at UWGB. Recently, Jakob entered a program at Northeast Wisconsin Technical College (NWTC), but did not have a good experience. Enrolling in a program that—as a now-30-something year old—took some courage to try, he became isolated and ostracized by classmates, and (according to Jakob) also by the instructor of the program. Kathi chimed in: “They like to say they’re Asperger-friendly, but…”
He tried working in the classroom, and found some satisfaction in substitute teaching (perhaps because it was inconsistent?) but had too many discouraging experiences in short-lived, full time posts to keep going. Like any of us would at some point, he eventually got the message the community had been sending him for so long.
Jakob has been entitled to certain services since he got on Disability, but other than the free health care, they too have not helped. Both Jakob and Kathi gave good marks to an official at the GB-centered, Aging and Disability Resource Center (Information and Assistance Specialist, Katie Erickson), and cited the niceness of Jakob’s Division of Vocational Rehabilitation (DVR) counselor. However, said counselor at DVR failed to get him a job despite Jakob having marketable skills. And when Kathi attended a meeting of the Brown County Community on Transition, she met other attendees who gave her their cards, telling her they could help the group members in their search for employment. But when the spectrumites called for help, their calls were not returned.
What has helped, I ask.
In this day and age, for Jake to find out he has autism so late is rather indefensible. One thing that binds us all as humans is a fear of the unknown, and a proclivity to assume the negative when faced with an unknown. And in Green Bay, there does seem to be a large reluctance to acknowledge, and especially honor and respect, differences (often of any kind). Jake and others will always know that they are different from their peers—they don’t need a diagnosis to figure that out! And without the word “autism, or “Aspergers,” those like Jakob will assume that the origin of their differences lies in being “less than” others; inadequate, or deficient when compared to their peers, which only kicks their already high-potential for low self-esteem into overdrive.
I’m trying to get this message across to Jake at the coffeehouse. I’m not succeeding, but…I see a seed planted.
ASNEW has also more than helped. Jakob and two groupmates meet once a week for a walk followed by lunch out. Many in the group, including Jakob, fear being outside, so Jakob knows the meetups are not only helpful to him, but that they cause members to help each other. Jakob has also found empowerment in writing pro bono reviews for Amazon, which has deemed his writing objective enough to give him a higher status of reviewer. And finally, as warms my ex-musician heart, he’s now into LPs.
One wonders, given the smile he omits when talking about what he can do, how much having the diagnosis earlier might have prevented the trauma…of too often focusing on that which he couldn’t do.
But…best not to worry over “What if..?” scenarios. Instead? It’ll be interesting to see in five years what many more months of walks with buddies, Amazon reviews, and LPs will do for him. I’m guessing he will at least let me take his picture…
…and not feel he has to hide.
Hey, locals! A couple of upcoming events….
1. Touchdowns for Autism is a free football clinic for spectrum kids and their siblings hosted by Centerpiece, LLC on Sunday, September 17 from 1-2:30 p.m. Click here for more info. And…
2. Tuesday, October 10 from 4-7 p.m. is the Brown County Transitions Fair. For more info, please click here.
Michael John Carley is the Founder of GRASP, a School Consultant, Peer Mentor, and the author of “Asperger’s From the Inside-Out” (Penguin/Perigee 2008), “Unemployed on the Autism Spectrum,” (Jessica Kingsley Publishers 2016), and the upcoming “’The Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum…and Beyond!” He also writes the more national Huffington Post column, “Autism Without Fear.” For more information on Michael John, you can go to www.michaeljohncarley.com.
To subscribe to his columns and newsletter, or to suggest stories within the Green Bay area, please click here, fill out the contact form, and check off the box at the bottom that reads, “Yes. Please include me on the event mailing list.”