Home // 2014 // February

Autism’s Secret Society

Four or five years ago, I was talking to the mother of one of my daughter’s classmates. We were talking about things to do with our children and she asked me, “are you on the list?” I had no idea what she was talking about. When I admitted my ignorance to her, she produced a poor-quality flier from her purse. It had a grainy black-and-white photograph of children playing in a gym. Attention All Families With Austim,” it read, “We will be having an event at [REDACTED]* this Sunday from 2-3 p.m. Please call [REDACTED] to RSVP and email Mother Jones** at [REDACTED] to have your name placed on the list for activities of The Group.”

I wondered what this was all about. When I asked her who Mother Jones was, the fellow mother shrugged and said, “I don’t know. She seems to have been around as long as I know. And she has an autistic kid herself, so she just started organizing things for the kids to do.” So, I got myself on the list, and I discovered that around here, the autism community has its own secret society.

Growing tired, as so many of us do, of going out in public and dealing with the general public and the annoying expectations of some people with “normal” children, Mother Jones began organizing huge play dates at various places in the community — sometimes the number of children that show up is in the hundreds. She rents movie theaters and shows sensory-friendly films, indoor and outdoor pools and water parks, playgrounds, dance halls, and just about any place you could think of for recreation and disseminates information to the people on her secret distribution list. It’s all in an environment where you are surrounded by people who “get it.” I’ve met a number of other families through the years at various events, and the parents (usually mothers) of young children tell me how isolated they felt until they found The Group.

Last year, Mother Jones finally organized a 501(c)(3) to cover any out-of-pocket expenses she incurs that she does not recoup through admission fees. She sent her distribution list telling us all about it. The next time I saw her, I asked her how much of her own money she’s laid out over the years, and she wouldn’t tell me. “Why the tremendous secrecy,” I asked? “Wouldn’t it be better if she could reach more people in the community by getting the word out?” “Not really,” she answered. “The events could actually become too large to manage. The word-of-mouth method has kept the numbers manageable over the years. It also allows me to vet each and every person who asks to be added to the listserv to prevent creepers from gaining access to our kids.”

She does vet everyone who is added to her listserv. How did I hear about her and where did my child go to school? How old was he or she and where did we live? Because both my children are on the spectrum, I was added to The Group’s activities for older and younger children. But we can go to whatever suits our family. I am very grateful that Mother Jones has taken this initiative and that she is so nice to our children each time she sees us. It’s a great relief to me to have somewhere to take my children to get out of the house on the weekends that gives us all something fun to do as a family. And I’ve met some really nice families through The Group. I’ve come to learn that not all secrets are bad. In addition to avoiding the “creepers,” as she puts it, the secretive nature of the group gives it a feeling of real security. You know the people you meet there are looking for the same things you are, and are in similar circumstances. And there’s real comfort in that.

As for Mother Jones, she continues to groom The Group and thinks up new and fun things to do. And she does seem to know the right way to get the word out. My children started seeing a local doctor about two years ago who has a practice exclusively devoted to children on the autism spectrum (after spending about six months on a waiting list). He was talking with me about the importance of getting out with the kids and doing fun things with them in a safe environment. After a moment, with a tiny bit of trepidation, he cleared his throat, paused and looked at me and with a sotto voce said, “have you heard about Mother Jones?” He has an autistic son and is a member of The Group himself. I laughed and told him that I had. Then I smiled and said, “I see she trained you well.”

*Any detail about this group has been omitted at the request of its founder. I told her about this post, and she begged me to try and conceal identities and information so that only those who already know about The Group (not its real name) would be able to ascertain about who and what I was speaking. I have honored that request.

**Obviously, a pseudonym. I named her after my favorite community organizer.


Note:  This post might be difficult for nervous flyers to read.  Trust me though, it is actually reassuring if you stick with it. And keep in mind that although I edited this post over many months, I finished it while in the air. On a United flight, no less.

I’m fascinated with those who keep their cool in extreme difficulty and manage to derive a good outcome in the face of major adversity. Hardly surprising, I guess, given that I am in EMS and as a friend said to me recently, “I have always thought of you as a grace under pressure.” I certainly aspire to that (although most don’t know how frequently I fall short of that). I like to admire those who have proven their mettle and think about ways that I can try to manage landmines in my own life.

There was a time in America, not too long, ago, when every aircraft had a single latch that would keep the cargo door on the underbelly of passenger aircraft shut.  In the rare instance that the crew failed to properly secure the door, or there was a mechanical or electrical problem, it could loosen in mid-flight. If it were to loosen enough, air would begin to leak around the seams of the door and if the airplane were at cruising altitude, the difference in pressure between the cabin and the thin air outside would cause what’s known as a “ring pull effect,” and cause the door to be sucked off the hinges. That’s exactly what happened on United Flight 811 in 1989. There was a warning light that came on in the cockpit, “DOOR FWD CGO,” that alerted the pilot of the problem. Unfortunately, in the case of Flight 811, it came on 1.5 seconds before the door blew off, taking a good chunk of the First Class cabin with it (killing 11 instantly), and almost sucking out a flight attendant, who was saved when a nearby passenger grabbed her ankle.

Once struck by the initial tragedy, the plane was in immediate jeopardy of losing control owing to the sudden depletion of oxygen in the air. And yes, the oxygen masks did deploy, but they did not work, because when the side of the fuselage was ripped off in mid-air, the lines carrying oxygen to the cabin were severed. The Captain and First Officer were able to remain conscious to get the plane safely landed in Honolulu by a stroke of luck. They made a rapid and controlled turn and descent back to the airport at Honolulu, landing without further injury or loss of life.

This incident created real change in the industry. First, airframe manufacturers began employing additional locks for the cargo door, so that if one failed, a pilot would at least have some time to try and make a controlled descent to equalize the pressure and prevent the door from being blown off the aircraft. Second, there is a a well-defined procedure in place now, through the use of a checklist, that specifies the precise steps the pilot and operating crew are to take in the event that the DOOR FWD CGO light comes on. There was one prior, but because there was no time to employ the measures it suggested before the door blew off, it was for all intents and purposes, a problem without a solution.

Atul Gawande extolls the virtue of checklists like these in just about every discipline in The Checklist Manifesto. His book is the result of a study on the efficacy of checklists in fields like aviation, with an argument that they would reduce mortality and complications in surgery (it was surprisingly rare to have checklists in surgery at the time he wrote the book in 2009). Gawande attributes the success of the landing with the remaining passengers and crew on board as the result of good hygiene by the pilot in employing emergency procedures. We use checklists (or “protocols,” as we like to call them) all the time in EMS. There’s a protocol for everything. Memorize the protocol, the theory goes, and you will be able to execute smoothly when you need it. Here’s an example for the protocol to follow when you have a pediatric patient with a heartbeat that is too slow: Ped Brad Algorhitim.

While protocols and checklists are, no doubt, helpful, there’s got to be more to it than that. Why is it people with the requisite knowledge and training can not execute even when they have the protocol at their fingertips? Why do they fail to follow it and make critical mistakes? Why can some people not even calm themselves enough to follow a protocol or checklist at all? I’ve spent some time trying to figure out what the formula for success in emergencies might look like. While I don’t think I could say I have identified and considered all the relevant factors, I think Gawande fails to account for the importance of two additional things other than good use of checklists: (1) the natural ability to focus; and (2) experience.

When asked how he made it through the event, and landed Flight 811 safely, the pilot, David Cronin, told a surviving passenger who was writing a book about the experience that, “I just prayed and got on with it.” Similarly, the “Miracle on the Hudson” pilot Sully Sullenberger said, “I had to focus on the task at hand, despite the stress,” he explained. “I only did the highest priority items and I had to do them well. This required the discipline to ignore everything else.”* What these two men have in common is that they were able to give a razor-sharp focus to the task at hand and to ignore everything else that was around them. Athletes often refer to this as “going into the zone.” There is little doubt that these two people were “in the zone” at the time they executed their respective emergency landings. I’ve wrestled with the question whether this is an innate attribute or whether it can be learned. There’s little literature on this topic, but I believe you have an inherent ability to do this or you do not. And the professions that value it (EMS, Airline Pilot, SWAT Team Member, Soldier, and many others) tend to be self-selecting. Someone who has anxiety every time the door closes is not likely to say “I think I will become an airline pilot.” If, by some aberration, you wind up in one of these fields despite lacking this attribute (which I will call “inherent focus”), you will likely be selected out in training.

What else must there be besides a coherent set of guidelines and inherent focus? The third attribute that seems to be important in clutch performance is experience. Sullenberger had thirty years experience and was less than a year from retirement when he landed on the Hudson. Cronin was on his second-to-last flight and was just weeks before retirement when he piloted Flight 811. This suggests to me that there is something beyond the checklist and inherent focus at work. In fact, Sullenberger did not have a checklist for a double engine geese strike — he had to devise a solution in under three minutes. The years of experience gave these individuals the ability to remain calm, focus, and to solve a novel problem. (This also makes me wonder whether we should be imposing mandatory retirement on pilots who are at the peak of their careers.)

As a society, we undervalue maturity and wisdom. Gawande’s theories certainly have merit and providing guidelines to follow reduces the risk of error when encountering common problems, but there is no substitute for the inherent focus and the experience that guides people toward better outcomes. This is our best hope to respond better to emergency situations.