I coached this guy Tanner who invented a thing to make milk flow smoothly in tubes and now he’s a millionaire tech CEO. During his fifteen-year marriage he’s scheduled sex with his wife, on a calendar, a year in advance. He was surprised to hear other couples do not do this.
And yes, he gave me permission to tell you this. He doesn’t care. He has Aspergers. Which is the point of this post. Don’t think of Aspergers as a social skills thing because smart adults can avoid social skills. I mean, think about it. Every time I make a public appearance, I find a place to hide.
So Aspergers is more like a social not-caring disorder. Because Tanner knows everyone has sex, so he has no idea why people care so much about sharing details.
Jacob is a music producer. I went to LA with my son to make a recording.
Jacob had car trouble on the freeway, so he drove off the side of a merge ramp that had a 70-foot drop to the freeway below. He said it was his safest option. I didn’t believe it until he took me to see the fence he landed on.
After a weekend with Jacob, we were hanging out in a big, oak-paneled auditorium, taking a break in between recording sessions, and my son said, “Mom, you and Jacob are crazy in the same way.”
“Like, you don’t know your left and right and neither does he.”
“Wait. Jacob, you don’t know your left and right?”
“No. I can’t tell time either.”
“Me either! Because time is left and right, right?”
“Mom! I can’t take it. Call Melissa!”
Call Melissa is what my kids say when they think I’m messing things up. Like:
I can’t remember what airline we’re on.
We don’t have money because I lost both my bankcards.
Last week my younger son was locked out of the house and instead of calling me, he called Melissa. And even though she is 6000 miles away in San Francisco, she could help him: “Go to the knitting shop. There’s a key under the rock. I told Mom to hide it there just in case.”
It turns out that Jacob has his own version of Melissa. A roommate who manages his life for him. His roommate has been his roommate for 15 years and now thinks nothing of talking for Jacob.
They were talking to a potential corporate client for recording and the client said, “Can you just let Jacob talk for himself?”
Jacob sees all questions as an invitation for soliloquy, on any topic.
Five minutes later his roommate said, “You can see now that I wasn’t talking for Jacob for his benefit, I was talking for Jacob for your benefit.”
The most common reaction people have to someone who has a very high IQ and Aspergers is that that don’t have Aspergers. The most common thing I hear from Tanner’s wife and Jacob’s friend, “No one would ever believe what I deal with.” (Melissa’s version of this is, “Write that down. It has to go on the blog.”)
People have no idea what to do when confronted with someone who seems perfectly normal, and extraordinarily successful, but actually has Aspergers.
My husband was so frustrated when a reality TV crew filmed our family at the farm for three days. He thought people would finally see how crazy it is to live with an adult with Aspergers, but in fact, the show got canceled because TLC said “Penelope and her family are too normal.”
My husband said it’s because we never left our house and I can control my environment at home. He says the producers should have watched me shop in the grocery store because I run people over with my cart all the time. (To be clear, I have never noticed this but he says that’s the whole problem. He says people give me dirty looks like they want to kill me and I don’t bat an eye.)
People ask me all the time how to help transition kids into adulthood. Based on the very successful people I know who have Aspergers, there is always someone on the sidelines functioning as a safety net.
And this doesn’t appear to be something you can pay someone to do. In fact it appears that it cost people money to help someone with Aspergers. Tanner’s wife comes from a wealthy family, which is good because Tanner doesn’t share his money. (He says he loves his wife very much, and he will buy her whatever she wants. She just needs to ask.) So when he wears black shorts to a black-tie event because he didn’t like fabric on his pants, she uses her own money to have a new tux delivered in less than an hour.
The roommate pays extra rent when Jacob gets fired. Which is frequently. (The last time was when his boss said, “If I were you I’d record that kid first because his dad is a donor.” Jacob said, “Oh.” Jacob did not record the kid. He was surprised when he got fired.)
People with Aspergers routinely perform at the top of their class throughout school. Eighty-five percent of people with Aspergers are unemployed. Thirty-five percent of people with Aspergers think about suicide. Here are links. They are not exact. I do not care that I’m not giving you exact numbers. I think numbers are a feeling.
As a society we have become adept at identifying Aspergers. So adept that we still use the term even though the DSM has declared that term is not a term anymore. But we have a terrible track record for dealing with it.
Part of the problem is people cannot understand how someone so smart could fail so profoundly. Another problem is humans naturally project: you figure that if addition is easy for you and you could do 2+2 when you were in kindergarten then I must be a lying psycho idiot when I tell you I can’t do basic third-grade arithmetic.
Another part of the problem is there is little understanding of the special type of support that someone with Aspergers needs as an adult. After seeing people like Tanner and Jacob I see my own situation better. I think success hinges on finding someone who loves you. But that’s not enough. That person has to be good at doing the things the person with Aspergers is not good at doing.
The person also needs to be normal. Which is why Tanner’s name is not really Tanner. Because his wife might have an extraordinary heart but she has a standard sense of privacy. Still, I ask her if I can write about the time he called 911 for her and then finished watching a movie because the rental period would run out before they got home from the emergency room.
“Go ahead,” she said, “if that’s what it takes for people to start questioning what high IQ really means.”