Catch-22

Hello,

StatMom has posted about her young daughter Reese's cruel dilemma: precisely because Reese is able to sit politely at meetings (so far, anyway) and because Reese and StatMom have worked so hard to enable Reese to adapt as much as she has, Reese might not be regarded as autistic. That means she might not get accommodations for the problems she still does have and might always have, such as her great difficulty switching to another task before finishing the previous one. She may even get punished as a result.

StatMom is, understandably, a little miffed. And it's a little nippy in Alaska.

I understand that some people have an image of autists and Aspies as non-verbal, perhaps even spastic, people who can't live on their own or hold a job or even a conversation. Part of that has something to do with media stories about these disabilities. Some of those stories make a point of showing the most extreme versions of these disabilities for dramatic value.

There certainly is something to be said for making people understand that autism and AS are serious conditions with serious consequences. That's like focusing on cancer patients who needed amputations, chemotherapy and frequent radiation treatments, all of which have visible side effects. And people with the most severe forms of any condition need and deserve all the help they can get.

Many other people with cancer suffer quite a lot but it gets noticed - and accommodated - much less. For example, if a cancer patient works hard to make sure her pain does not distract others, she may successfully avoid upsetting others but she can still be in great pain and be unable to pursue many activities.

Even with agonizing and inoperable cancer, a determined enough person can do a wide variety of things. Including serving as a U.S. senator. (Happy Birthday!)

We Aspies and autists are trying to meet NTs at least halfway. We're compromising between our needs and the customs and expectations of a world we will never fully understand. For example, we have limited amounts of energy for socializing, but many of us can do it for clearly defined (non-marathon) intervals, with advance notice. It is not inconsistent on our part to attend, say, a pre-arranged dinner and then leave without going off with some other people elsewhere for dessert - especially if the dessert invitation was on the spur of the moment. Or to attend one party and not another on the same holiday.

Nor is it inconsistent for us to be much better able to hold a conversation one-to-one than in a small group. Or to be much easier to get along with when we're fully rested than if, for whatever reason, we've been running on insufficient sleep. (It is our responsibility to get enough sleep whenever possible in that case, though.)

Or to be a Nobel Prize-winning economist and still behave differently from others and sometimes find accommodations helpful.

And it's more than time for us to put aside the garbage about "Why can't you do A as well as everyone else...you're so smart with X, Y and Z!" For example, we all know that one can fail one's college entrance exams as a whole even while getting high marks in Math and Physics...and still be no dummy. Aspies often have special talents, such as a keen eye for detail, the ability to focus and even sometimes good verbal skills. That doesn't mean we don't need help in other areas.

If we face an "all or nothing" choice, if our meeting NTs halfway means they think we can go the rest of the way just fine, if our reward for busting our butts and pushing back the frontiers of our comfort zones is disregard for the issues that remain, if our hard work to conform whenever we can means we get blamed and punished whenever we can't, with our good behavior all those other times being Exhibits A-E against us - "Obviously, you do know better...." - well, how would you respond in our place?

What do you think?

PS: If any of Reese's school administrators happen to read this: You would be well advised to give her the help she needs. StatMom has triumphed over much more than problems at her children's schools, more than she's even discussed in her blog. She will hang anyone out to dry who puts her children in impossible situations.

An Aspie Moment

Hello,

Once in a while, I have distinctively Aspie thoughts.

Recently, while walking around on campus at the local community college, I saw someone sitting down and looking at some kind of digital device. She was visibly upset, and looked like she was on the point of tears and/or had cried. So I told her whatever it was, I wished her the best of luck and hoped it would be resolved soon.

Walking away, I had an idea. Lots of places have automated text-message alerts, like when school is closed due to snow, you've got a new email or some emergency has hit your campus. Meanwhile, people who take their loved ones to the hospital often wait in suspense, wondering if they will recover, become permanently crippled, go into a coma or even die. They spend hours at the hospital...time that could be used to take care of their children, work, or even get their loved ones' affairs in order, just in case.

So, I wondered: why can't hospitals offer text-message alerts when patients go into surgery (and say what kind of surgery: eg, amputation, appendectomy, open-heart surgery), come out of surgery (complete with outcome), have definite diagnoses, slip into comas...or die? For example, a text message could read "JOHN DOE - DIAGNOSIS: STAGE 4 BRAIN CANCER - INOPERABLE" or "JANE SMITH - DIED 1:45AM, 02/16/09: MASSIVE INTERNAL INJURIES FROM AUTO ACCIDENT"

That way, family members and friends - who presumably already know the patient is already being treated by professionals and that there is nothing they themselves can do for him/her now - can go about their business with the understanding that they'll be the first to know when something happens.

That's the kind of idea that might appeal to Aspies, if we're much more comfortable thinking in terms of fast information and who might actually prefer something like a text message since they can deal with it in private and not have to compose themselves in front of a doctor.

That would be unacceptable to pretty much any NT (and possibly even some Aspies, too). Family members and friends generally don't want to bury themselves in work, let alone "business as usual," under such circumstances. Most of them would have great difficulty concentrating on anything else while their loved one was hanging in the balance on the operating table or in the Intensive Care Unit. And if, say, their loved one had to lose a leg or was paralyzed for life or permanently disfigured, or was diagnosed with AIDS or cancer, or even died, the very last way most people would want to find out would be by something as impersonal as a text message, let alone an automated one.

The idea might seem logical, but it would feel horrible to most people. It would feel like your brother or daughter or wife or grandfather or best friend was so insignificant to the very people supposed to be taking care of him/her that they don't want to take any more time than necessary to let you know what happened. It would feel like they were so cold and uncaring as not to even try to help you feel better about it, as if you weren't supposed to be hurt so much by the news or they didn't care how you feel.

That's also why it's considered bad to fire people via email or text message - which, unlike the hospital text message alerts (as far as I know!), has actually been done.

Meanwhile, Casualty Assistance Officers have an entire set of protocols spelling out how to notify the next of kin of someone killed in the line of duty. For example, they always receive special training, they always notify primary next of kin (surviving spouse, or if none then parents) in person and within 24 hours of the military finding out about the death, they always notify people in pairs and they never publicize casualty information until after next of kin have been notified. All of these measures are critically important to reducing the extreme blow to people's feelings when they learn that their spouses or children have been killed.

The moral of the story is: logic and efficiency have a place, and they need to be kept in their place. We also need to be vitally concerned with people's feelings, and do the best we can to avoid hurting people emotionally even - no, especially - when we think we're being logical and efficient.

What do you think?

EDIT: The Onion has taken this to the next level...and then some. (Only read this if you've got a strong stomach. Let's just say The Onion writers really do their homework.)

Interview with a Special Educator

Hello,

I've had the good luck to interview Eileen Magan, an expert from Maryland, who has worked with Aspies and autists in a variety of settings. Among other things, she's been a Peace Corps Volunteer in Romania, where she taught a 13-year-old Aspie. (Some of the most generous people I've ever known were in the Peace Corps, and she does not seem like an exception.)

Eileen and her father Alan Magan now have their own café, Chesapeake Gardens, where they've developed some gluten-free/dairy-free soups which they hope will help autistic children. Some people believe that gluten-free/dairy-free food ameliorates some of the issues associated with autism and AS, and that may be true on an individual basis. (For that matter, they may also help some NTs.)

Meanwhile, Eileen is finishing up her Master's degree in Special Education, after which she hopes to teach at a charter school in Baltimore. She's been kind enough to share some of her experience with us.

1. Could you please describe briefly your work with people on the spectrum? What were their ages?

I've worked with people on the spectrum since I was 15, so over 10 years. Honestly the ages and situations have ranged -- I've worked with people from age 3 to in their mid-40's, with everything from 1:1 ABA [Applied Behavior Analysis] therapy to summer camps for people with disabilities.

2. How has working with them been different from working with NTs? What were the most important challenges?

It really depends on the age -- a lot of work has been working with young children on the spectrum, it which case the important challenge has been social. A lot of times the children are taught rote social conversation without ever understanding what it MEANS. [Emphasis in original]

For instance, I worked with a 6-year-old with Asperger's who was taught whenever he cried, a therapist would ask "Why are you crying?" He would say "Because I am sad." However, during a Floortime play session I tried to explore further - "Why are you sad?" He responded "Because I am glad." Since the "correct response" was "Because I am sad" and I had asked a follow-up question, he simply assumed he had answered "incorrectly" and had to come up with another response.

A lot of times teaching how to respond socially isn't necessarily the best approach if the person doesn't understand the emotions they're experiencing or the reason for the social context.

3. How do you think their situations affected them most?

It depends where they are on the spectrum. If the autism is more severe, even basic communication might be a challenge. If they have Asperger's, it might be mostly social

4. What does it take to successfully work with people on the spectrum?

I think it takes empathy and patience, but also a sense of humor. Sometimes by attempting to be too politically correct with someone on the spectrum you're really just talking down to them instead of trying to relate. When working/talking with people of a similar age, sometimes I think it's more appropriate to tell them you didn't understand/appreciate a certain comment or remark than trying to act polite and politically correct.

5. Do you plan to work with people on the spectrum in the future? If so, what (if anything) would you do differently? Also, what would you advise others planning to work with people on the spectrum?

After working almost exclusively with children with autism in Romania, I'd definitely like to focus on autism in the future. It's hard to say what I would do differently, since working in Romania is a very unusual circumstance. But I'd advise (and probably take my own advice moreso) what I said for Question #4.

6. How do you think people on the spectrum can best overcome their distinctive challenges?

By figuring out what works best for them. For people in general, I think there is always a decision to be made of whether it would be easier to overcome a challenge or to develop a coping strategy. For instance, if large groups make you uncomfortable, you can either overcome the discomfort or you can try to avoid it and stick to smaller groups of people. I think there's merit to either approach.

7. What can parents, teachers, peers, employers, potential friends/partners and others do to best help such people? What challenges are most difficult and most important?

Like I said in Question #4, I think it's extremely helpful for the people involved in the person's life to be straight-forward with them. No one is going to benefit from the things that are left unsaid because you feel uncomfortable being honest with someone. As for younger children, consistency and repetition with certain skills is crucial. [Emphasis added]


What do you think?

Constructive Confrontation: A Call for Mentorship

As we know, it's generally a good idea to let someone know from the git-go if you're not interested in dating, working together or the like, or if there's a problem. We Aspies and autists can help set the example.

One thing we've pointed out is that suffering in silence generally doesn't even help the other person, who's going to need to know sooner or later and will probably only be hurt (more) to find out later, after building up expectations.

The great irony here: if you let something slide, you can easily end up behaving worse toward the other person. As I've found out firsthand, some people drop hint after hint, get frustrated after their "clear signals" are "ignored," do a slow burn and then blow up at the other person.

Others who see their subordinates, protégés or students exhibiting problems but don't feel comfortable confronting them about it - especially if they do hold it against them when giving (or evaluating) assignments or other things or even deciding whether to keep them - are shirking their duties as bosses, mentors and teachers.

If you recognize yourself, here's an excellent opportunity to take a great step forward in 2009. People will respect you a lot more when you show self-control and the courage to apply the proverbial stitch in time that saves nine.

Take a leaf from the electricians: Adding a connection to the ground diverts excess voltage and releases static electricity buildups, which can otherwise burn and even electrocute people. Likewise, when you keep people "grounded" by "keeping it real," you divert energy which could otherwise build up, give you a slow burn and even shock you and everyone around you.

(No prize for guessing that I was raised by an electrician.)

Yes, there's a risk that the other person will not take it well. In that case, you've gotten an invaluable opportunity to test his/her maturity. If you're his/her boss, mentor or teacher, you can use that knowledge. Even if it's just someone you don't want to date or be friends with, you know to be glad you dodged that bullet.

(And if s/he starts harassing you, you can call the police knowing you gave a fair heads-up to leave you alone. If you can document that to the police, they will be much more likely to take swift action.)

Whatever your title, if you're a boss or teacher/college professor, you're also a mentor. As Spider-Man famously put it, "With great power, comes great responsibility."

In fact, mentorship has never been exclusively official. Friends (and I don't mean MySpace or Facebook "friends") are classic mentors.

StatMom has written an excellent account of certain Aspie impulses which - channeled appropriately - can help us Aspies and autists lead the way. Her daughter Reese, like many if not most other Aspies, is quick to see when things go wrong, and wants to put them right. Being only a child, she bosses people around and demands that they do whatever it is that needs doing. StatMom is showing her that most often (not always) only adults give orders.

But children can still be mentors to their friends and other people. Even with the tough tasks of persuading their friends that, say, copying their neighbors' tests is a bad idea, or sharing a bit of one's lunch with someone who forgot her own can be a good thing to do.

From long experience, I have come to embrace the old Russian proverb "The yes-man is your enemy, but your friend will argue with you." Now, the most important thing about all of my friends (not to mention Emily) is the ability and willingness to find and point out how I can improve (and of course, to value the same from me). That's exactly what it means for us to watch each other's backs - our blind spots.

Compliments are important social lubricants. The real machinery of friendship and mentorship lies in seeing how your brother, neighbor, close friend, wife, student, subordinate, etc., can be a better person, do a better job, become a better friend or partner...and then showing him/her the way. Aspies and autists' eyes for detail, verbal skills, courage and honesty - leavened with appropriate social skills like courtesy - will help.

What do you think?

One Aspie and Autist Contribution to the World - More Honesty

Hello,

The article "Guys, Are You About to Be Dumped?", by Bob Strauss, shows an incident in which tact and subtlety were taken way too far:

"Recently, I went out with a guy for a second date," says Melissa from Chicago. "Before this, I tried to give him all the tell-tale signs that I wasn't interested, but he persisted: He wouldn't stop calling, he wouldn't stop asking me out. So just to get him off my back, I agreed to go out one more time.

"During the date, to continue to show him I wasn't interested, I brought up every taboo subject I could think of, and tilted my views toward the radical side: feminism, politics, religion, marriage, etc.", says Melissa.

"When he dropped me off, I very clearly leaned toward the door away from him, and hopped out of the car as soon as possible to avoid the terrible ‘good night kiss.' After that, he finally figured it out!"

We'll never know just what kinds of "tell-tale signs" Melissa tried to give him, or whether he was an Aspie. On the other hand, as Strauss himself points out, "[G]uys aren't very good at picking up clues."

Faced with a guy who apparently wasn't good at picking up clues, Melissa did the wrong thing. She actually agreed to his requests.

Melissa might have thought that her behavior on the second date would have turned him off completely. Unfortunately, she was mistaken. Only her avoidance of a good-night kiss convinced him that she wasn't interested.

If I were still on the market and had a date like that, my interest would have been piqued. I admire people - especially women - with strong opinions and the courage to express them. And I would have interpreted the discussion as a sign that she felt comfortable enough with me to talk about these things.

How ironic that Melissa did all this precisely to cover her lack of courage. All she had to say was "Thank you for your kind offer, but I'm not interested. But good luck finding the woman of your dreams!" She didn't want to actually say it - but she wanted him to know it anyway.

What if he remained interested in Melissa and never got her hints? Did she think it would get easier as time went on? When was she going to break the bad news to him - the day before the wedding?

Maybe we Aspies can help. We know what it's like not to get a hint, and we practice our honesty skills.

Let's look at what he was doing. He was asking Melissa out. Note the operant term here. It means that a question is being posed, to which there can be more than one answer. When someone asks you out on a date, s/he understands that the answer can be either "Yes, I'd love to" or "No, thank you."

Maybe, just maybe, the person is a grown-up, and he'll accept "No" and move on with his life. If he doesn't, let that be his problem. As a last resort, that's what the police are for. It's certainly not fair to just assume that a given person won't take "No" for an answer.

In fact, it's not fair to either side. Melissa wasted a lot of her time, money and tension, some of it in the company of the very guy she wanted to avoid. She might have also put her reputation at risk, if the guy spreads the word that she has bad dating manners. Maybe she didn't mind that. Problem is, she wasted his time and money too. Perhaps worst of all, she also treated him like a baby who can't stand to hear the word "No".

Some people defend the practice as "letting him down easy". Next time you need a Band-Aid removed, is that the approach you want to take? Trust me, removing a human being feels much the same way - just more intense.

MUDs (Multiple User Dimensions, or Multiple User Dungeons) have different kinds of characters, such as Thieves, who have high Dexterity scores and are good at sneaking past guards and monsters, picking locks and stealing things, Fighters, who have high Strength scores and are good at killing tough monsters, and Magic-Users, who have high Intelligence scores and are good at using magic powers. The different kinds of characters need each other; none can succeed alone.

You might say this world is like a great big MUD. NTs may have high Tact and Subtlety scores, and are good at building connections among various types of people and communicating subtle nuances. Aspies and autists have high Honesty, Directness and Firmness scores, and can be good at enforcing boundaries and nipping one-sided "relationships" in the bud.

Strauss says "My advice to my fellow single guys? Maybe take a hint and bail before things get that bad." A good piece of advice. Here's another one: Maybe tell the other person straight out when things aren't working, just in case he doesn't take your hint, precisely so you and he can bail before things get that bad.

Don't thank us: we're happy to help.

What do you think?