Thanks to everyone who showed concern over my announcement (whoa, that was TWO WEEKS AGO?) that Jeffrey has been diagnosed with Asperger’s Syndrome.
Here’s the backstory:
- We’ve been trying to figure out Jeffrey with the help of various psychologists since he was 5. It was thought with his initial testing back then that he had either ADHD or Asperger’s, but he was too young for an definitive diagnosis.
- From January-June 2008, we sent Jeffrey to weekly play sessions with a children’s psychologist. (We had excellent mental health care coverage in Pittsburgh.) The final call by Dr. J? Possibly something called an “Executive Function Delay,” which will make it difficult for him to learn certain things (like writing and reading. Bad news for his children’s librarian mom).
- Jeffrey discovers ancient Egypt, ancient Rome, the American Revolutionary war, and other things about history that continue to fascinate him. First clue.
- In kindergarten, Jeffrey’s teacher didn’t think anything was unusual or different about him. Although, he did get bullied by his peers that year. I could tell that he was considered an “oddball” by his classmates.
- Within the first week of first grade, I began to get phone calls from his teacher. Jeffrey needs speech therapy, occupational therapy, pull out time with a reading specialist, and why can’t he stay focussed long enough to complete the most basic task? Jeffrey — who has always been a fidgety kid — begins a nervous habit of chewing his clothes. Handwriting is painful. Second clue.
- Christmas 2009 — we get a Nintendo Wii for the holidays, but Jeffrey is too excited to learn how to play them. He still spends “Wii time” watching Brian and I play, and jumping up and down a lot.
- February 2010 — maybe Jeffrey has ADHD? His pediatrician gives him a prescription for stimulant medication, but they aren’t as effective as they should be. Anything beyond a very small dose gives him mania.
- February 2010 — piano lessons have become too painful to continue. Jeffrey takes a break, and Eleanor takes his spot with his teacher. She’s only 4 at the time, but progresses twice as fast as he did.
- March 2010 — Jeffrey develops a nervous stutter. Third clue.
- Spring 2010 — Jeffrey goes in for consultations with the Center for Children with Special Health Care Needs. We try antidepressants to help with his anxiety, but once again: mania. He was running around the neighborhood barefoot in 45 degree weather.
- Summer 2010 — Away from school and classmates, Jeffrey’s stutter disappears. His collection of books about ancient history is quite extensive. He becomes obsessed with complex role-playing board games (like Settlers of Catan and Dungeons & Dragons), although he prefers to make up his own rules and detailed dramatic scenarios that his friends can’t understand. He doesn’t seem aware when his friends are bored or unable to penetrate the rich fantasy world he’s constructed. Fifth clue.
- June 2010 — Jeffrey takes an intensive reading workshop with the University Reading Clinic. During his final evaluation, his tutor says “I think Jeffrey has autism or Asperger’s or something.” I think: oh, you must have gone to a good medical school to make that diagnosis, Mr. Reading Tutor! Geez.
- August 2010 — I ask Jeffrey if there’s any place he’d like to go for his last day of summer vacation, and he requests the Beehive House on Temple Square. While there, he gladly answers all the questions the tour guides pose. When Eleanor answers a question incorrectly (“the pioneers came on a train!”) Jeffrey corrects her (“No, Ella. The railroad had not been built during this time period.”) Everyone on the tour thinks he’s brilliant. Sixth clue.
- Second Grade — Within the first week, I’m once again fielding phone calls from his teacher. Jeffrey needs speech therapy, occupational therapy, and why can’t he stay focused for very long? Why does he keep interrupting class to talk about writing a play, or Egypt, or Star Wars? I spend a lot of time crying. We’re still waiting for the occupational therapy to get started.
- September 2010 — Jeffrey makes a poster about himself for school. He insists that almost half of the poster be about history, and the other half about National Parks (Jeffrey is something of a fervent environmentalist.) It’s pretty obvious to me by now what’s going on, although other family members remain skeptical.
- October 2010 — Jeffrey is tested by a psychologist who specializes in behavioral disorders at the Center for Children with Special Health Care Needs. After Jeff delivers a lengthy monologue about ancient Egypt, the doctor declares his diagnosis to be “definitely Asperger’s.” Oh, and that diagnosis of “Excecutive Function Delay”? It falls on the Asperger’s spectrum.
So what this means is (to over-simplify it): in Jeff’s brain, his senses are heightened, but his reaction is to back away, to feel overwhelmed. Jeffrey’s inability to focus isn’t caused by distractibility; it’s caused by anxiety, which is why he was stuttering, why he was chewing his clothes, why he jumps up and down when watching video games or television, why he doesn’t look me in the eye when we talk, why the ADHD medication has given us mixed results. It’s also why he can’t navigate socially very well with his peers — other kids make him so excited that he doesn’t know how to behave around them. Although he loves other kids, they get him so worked up that he often retreats into his own personal fantasy world — which is why he doesn’t realize when they aren’t playing with him anymore. The fantasy world is also why he frequently interrupts classroom discussion and conversations with non sequiturs. The heightened sensory input also affects his writing — holding a pencil is just darn uncomfortable. (Imagine putting a pencil between your toes. It would drive you crazy, right?)
It’s essentially a diagnosis of Extreme Social Awkwardness, for Jeffrey.
The good news is that Jeffrey’s condition is, on the autism spectrum, pretty mild. He smiles, he loves physical contact, he isn’t picky about his clothing or food, and while his fondness for history is unusual, it isn’t as all-encompassing as it is for many Asperger kids’ obsessions. (I highlighted it in my timeline, but Jeffrey has plenty of other interests beyond Egypt. This one’s just darn persistent.) If your experience with autistic kids comes from reading books like The Curious Incident of the Dog in the Night-Time or Parallel Play, throw it out the window. A spectrum disorder means a lot of diversity.
If you suggest that the solution to Jeffrey’s problems is homeschooling or some kind of private tutoring, you’re wrong — the last thing he needs is to be taken away from other people. If anything else, Jeffrey needs more opportunities to practice his social skills. I’ve read that having Asperger’s is a lot like being in a foreign country — you speak the language, but you don’t get jokes, subtlety, social customs, etc. and this makes you reluctant to interact with anybody. Immersion is the only way to overcome this. In fact, many adults with Asperger’s enjoy living in exotic cultures (such as Japan or India) because their difficulty in grasping social norms is chalked up to being a foreigner, not to being “weird.”
The other interesting news is that my mom and I have realized that one of my brothers probably also has undiagnosed Asperger’s. This is hopeful for me, since said brother is now a rather fabulous high school student with good grades and friends. Many kids with Asperger’s grow out of it as they reach adulthood. This gives me hope.
So: right now Jeffrey’s taking a Social Skills class with a non profit in town called the Children’s Center, where they practice basic things like giving good eye contact, speaking slowly enough for someone to understand you, and how to take turns with asking/listening. We’re still waiting for occupational therapy to get started. And my reservoir of patience for Jeffrey has just been refilled. Honestly, it’s a relief to get a name, a diagnosis to something that has been otherwise incomprehensible and frustrating.
In the meanwhile, the people who glare at Jeffrey during church services (and sometimes move our church bags to a different pew so they don’t have to sit next to us) can donate money to Asperger’s research and leave us otherwise alone.
Yes, you read that last sentence correctly.
Also, the brother-in-law who once joked to me that he “hopes he never has a kid like Jeffrey” can make a SIZEABLE donation to said institution for Asperger’s research. And then imagine what life would be like if I had some kind of long-range slapping device.
Those of you who know and love Jeffrey, and see his sweetness and goodness underneath his mountain of problems, who show him patience and compassion despite the high-energy quirkiness, thank you, thank you, thank you. I’ll be needing your help from here on out.