Legal pad in hand, I bang the brass knocker. Given my knowledge of autism, plus Mark Stone’s caveat about the discrepancy between his daughter’s maturity level versus her chronological age, I expect to meet a young woman who is low-functioning autistic. A twenty-six-year-old woman would be well past the age of flapping her wings as she runs through the house. Yet I picture her talking in monosyllables. No eye contact. Staring into space.
If Akira is higher up on the autism spectrum, I prepare to endure a monologue on the natural habitat of the Venus flytrap, or a discourse on the preponderance of dust bunnies due to climate change. Of course, Mark could be exaggerating about his daughter’s deficits.
A tall, lanky man with a receding hairline introduces himself as Mark. He ushers me into a spacious family room with a high ceiling and gestures to a chocolate-colored La-Z-Boy chair, flanked by an unlit red brick fireplace.
Mark crosses the room to join a pale-faced young woman sitting on a brown leather sofa, a small dog in her lap. “Akira, this is Jennie, your new life coach.”
A flicker of surprise sweeps her eyes. Then they go blank. “Hello,” she whispers.
Evidently Dad has kept secret from his daughter our meeting’s objective, or perhaps even the meeting, itself.
“Thanks for inviting me into your home. How can I help?”
Mark begins. “My wife died ten months ago, after five years of struggling with ovarian cancer. It’s really taken a toll on our family. We are still suffering.”
“I’m so sorry for your loss,” I mumble. What else can one say in such a sad situation?
“My wife was the one who took Akira to college classes all these years. She made sure my daughter received the special services she required. Now that my wife is gone, I doubt whether I can fill her shoes. Annie, Akira’s younger sister, already lives on her own, while Akira has never been to a grocery store or a shopping mall by herself.”
I notice Akira flinch at his words.
“What concerns me most,” continues Mark “is whether Akira will be able to live independently after I die.”
“Independent living is a concern many parents of adult children with disabilities share,” I say. “There are group homes for young adults with autism.”
“My wife and I checked into that possibility before she died. There’s a waiting list of several years. Akira may not even qualify.”
I turn to the young woman. She’s nibbling on her nails. “What are your thoughts about someday living on your own?”
“I want to learn how to take care of myself, but I’m not sure whether I can live away from Dad.”
Responds in complete sentences, I scribble on my pad.
“How is she going to live on her own when she has no driver’s license and no job?” Mark musses.
“You never made a big deal about it before now,” Akira says timidly. “You said you liked having me live with you because it gives you something to focus on besides needing to mow our large yard.”
Mark doesn’t respond.
“Did you attend college?” I ask Akira.
“She actually received an Associate’s Degree in General Education.” Mark grimaces. “Took her eight years to get it.”
Akira scratches the crown of her head.
“Lots of people work and go to school at the same time,” I say.
The young woman shakes her head. “I changed majors three times. Then my mom got sick and I had to drive her to chemo twice a week.”
No fixation on single topic. A good sign.
“How long ago did you receive your degree?”
Dad rushes in. “She’s been out of school for three years.”
“Have you ever held a job?”
“I did stock work at a department store and at a pet shop.”
“She was fired from the department store and left the pet shop to help care for my wife,” Mark says.
I’m no social worker, but I sense a palpable resentment behind the father’s words.
Nothing unusual, there. When given an opportunity to vent, parents of children with disabilities often lash out at the injustice of it all.
Akira glances down at her lap.
“What caused you to get fired?” I ask.
“She’d oversleep,” said Mark. “She spends fourteen to sixteen hours a day upstairs in her room playing video games. Often, she’ll roleplay for fourteen hours straight, not even stopping to eat or drink.”
Dad just can’t restrain himself from replying in his daughter’s stead. I turn to the young woman. “Did you ask your manager to schedule you for a later shift?”
Akira and her dad shake their heads in unison.
Advocacy training needed, I note. “How much were you making per hour at the department store?”
Once again, it is Mark’s voice I hear. “Only minimum wage.”
I attempt to engage Akira in conversation. “If you could do any kind of work, what would it be?”
Now Akira’s eyes glow with excitement. “I’d love to design video games.”
“Gaming was her third major,” scoffs Mark. “It was a disaster.”
Akira nods miserably. “The semester final was nerve-wracking. We had to write strings of code. I walked out and didn’t finish the test.”
Test anxiety, I write.
“You’re three years older and wiser, now. Would you consider going back and trying again?”
“She’s already attempted computer programming, graphic arts, and gaming. I’m not wasting any more money on her education.” Dad is extremely frustrated. “She’s got to get a job.”
“The thing is, Mark, seven dollars and fifty cents per hour isn’t going to cut it if you want Akira to eventually live on her own. She needs to train in a technical program that will guarantee her a living wage.”
“She needs a job, not more training,” Dad retorts.
Akira clasps her hands tightly. “I’m not sure if I’m ready to go back to school.”
I switch gears. “Have you ever been tested for learning disabilities or ADD?”
Akira shakes her head.
“She had years of pragmatics training back east.”
Pragmatics training is social skills training taught by social workers or psychologists. It
has zilch to do with academics and everything to do with role-playing social situations, like “How can you tell if somebody is being sarcastic?” or “How do I ask if there’s space for me to sit at the school lunch table?”
“Were you better in language arts or in math?”
“She wrote a couple of decent essays when she was in high school,” says Mark.
“How about we begin by doing a reading and written expression assessment to discover her strengths and weaknesses? The tests will give us a baseline. Then we can move on from there.”
Mark and his daughter hesitantly agree.
“We’ll begin tomorrow. Before I go, I’d like to do a quick student interview to get to know you, if that’s okay?”
Akira’s eyes widen.
“Not to worry, it’s just a questionnaire about your likes and dislikes.”
She smiles wanly.
“I like pretty much any shade of blue,” she responds.
“Rush Hour. No matter how many times I watch it, I can never stop laughing.”
“I love the Dragon Riders of Pern series and a lot of fantasy type books. I haven’t read any in a while, though.”
“I like to draw anime, play video games with my friends, and watch Japanese cartoons.”
“Do you ever journal?”
“Not so often,” she says.
Her shrug tells me never.
“Tell me three words people use to describe you.”
Akira appears stymied.
I rephrase the question. “How would your friends describe you?”
“Uh… loyal, carefree, friendly?”
Seeks approval, I note.
“Tell me something that makes you special.”
There is a long pause as Akira considers the question. “I’m not judgmental and it takes a lot to make me angry.”
Such introspection in a young person with Asperger’s is unusual. I turn to Mark. “When was the last time you had your daughter retested for autism?”
“Not since her pediatrician first diagnosed her at age 10.”
“As a former special education teacher, I don’t see defining signs that appear on the autism spectrum. I can give you a referral to get her retested by a psychologist.”
Mark waves off my suggestion. “For now, let’s just have Akira do your testing and move on from there.”
“Sounds good.” I gather up my evaluation materials and head for the door.
My initial conversation with Mark led me to assume that his twenty-six-year-old daughter was functioning at the level of a high school student. Although far from a happy camper, Akira’s intelligence and introspective ability definitely negates that assumption. Is she really autistic? I wonder. Depression, anxiety, or self-esteem issues might be the real culprit. My curiosity is peaked.
“See you tomorrow.” I bid Akira and her father adieu, hoping tomorrow’s diagnostics will provide clarity.
As soon as I pull into my garage, I phone Geri, my special education teacher friend back in Chicago. She’s been teaching autistic students for decades. If anyone can explain what’s going on, it’s her. I shut the ignition, then blurt out, “I think my new client was misdiagnosed.”
“And a good day to you, too,” Geri says heartily.
“Sorry. Didn’t mean to bowl you over,” I say. Then I tell her the whole story.
“You’ve taught autistic high school kids,” she replies “You know what signs to look for.”
“Yeah, but the two autistic high school students I taught at COVE were bright but lacked Akira’s communication skills.” I neglect to mention I’d stretched the truth with Akira and her dad, regarding the extent of my autism expertise.
“First of all, there’s a complete range of abilities, even on the high end of the spectrum,” says Geri.
“You’re talking musical protégé or math genius, or the successful nerds who enter the work force in computer programming, technology, and game design. But how many of these people excel in expressive and written language?”
“Look, you’ve only met this gal one time. Do your testing. Start working with her. Then see if you still feel the same way. Just remember, you’re a special education teacher, not a psychologist. You can’t diagnose who does and doesn’t have autism.”
“I know, I know.”
Just then, my hubby walks in the door from volunteering at the local food pantry. “Talk to you soon,” I tell Geri.
As I click off the phone, I debate whether my gut feeling can be trusted.