Asperger’s, Tourette’s, and Thanksgiving

Published November 26, 2009 by Nancy

For some families, holiday get-togethers are tense.

Everybody’s got an agenda. Everybody’s got expectations.

That’s too bad, because Thanksgiving can be a lot of fun. The idea is to just enjoy being together. Have some fun, eat good food, hug a lot, hike in the woods. Sleep uncomfortably, screw up the turkey, spill the milk. Drink a bit of wine, laugh a lot.

It’s never a time to air out old grievances, pin people down, or make demands.

If you or a family member is Asperger or Tourette, then holidays are especially tense.

Here are some of the ways Asperger and Tourette kids and adults experience family gatherings:

1. There is too much strange new food. Or too much familiar food cooked weird. You’ll hear: “Yuck! This tastes awful.” You know what happens then. Grandma looks horrified, Auntie June frowns in disapproval, Uncle Ted mutters something under his breath about ungrateful kids.

2. There is too much noise and too many people. They cover their ears and go hide somewhere. Anti-social-like. Grandpa roars: “What’s wrong with you? Too good for us?”

3. Relatives walking right up to their face and talking right into their nose. Loudly. “Well, is this little Jimmy? Look how you’ve grown! Do you remember your uncle Charlie? And Auntie Ruby? So how’s school going, son?”And in defence against this intrusion, expect a reply of: “#$%@! off!”

4. They accidentally expose simmering tensions, white lies, and contradictory facts. This is always met with a horrified silence.

Why does this happen?

Families are about conformity. It’s a kind of fake conformity, because we’re all different, on different paths, with different ideologies and priorities. But when we’re together as families, we try to fake unity. We pretend — for the sake of the family. It’s too bad that we do this, because someone who doesn’t get that ends up easily piercing this conformity.

Over and over again.

Some advance planning can help.

1. Talk to family members in advance. Make sure they’re aware of the types of behaviors to expect. Make sure they know how best to accommodate to the special needs.

2. Explain about over- and under-sensitivity. Get everyone to decide to build the meal and activities around choices.

3. Agree in advance that putting a person down because they can’t eat food is being rude. And not the other way around.

4. Explain about inability to lie. Agree in advance that this is a good thing. Agree to accept that there will be embarrassing moments and hopefully you’ll all find a way to laugh about them.

5. For the Aspie person:

• Bring a book to read.
• Upon arrival, find a few quiet places for alone time.
• Help in preparing the food so that you get to make things you like.
• Do more listening than talking.
• Designate “answer” people that you can go to quietly to ask questions, rather than asking the group.
• Plan to advocate for yourself.
• Decide what you would find fun and be prepared to do that.

sensory processing and riding a bicycle

Published November 14, 2009 by Nancy

Ah, the summer joy of riding a bike… whooshing down the street, flying down the hills and racing up the other side, zipping across town in five minutes flat…

Alas! for kids with SPD, riding a bike ain’t like that.

Imagine square wood wheels and unscrewed handlebars. Add a seat so high you have to lean down to hang on.  Then imagine riding along a freeway with transport trucks rumbling and belching and pulling at the air beside you.

Fun, huh?

Why is cycling so hard for SPD kids?

Their vestibular sense is not plugged in securely to their brain.

Vestibular = balance = keeping upright and moving forward

You have to be able to feel the balance and the forward movement. Not easy if your vestibular sense can’t communicate to your brain. You never really know where your body is relative to gravity and the hard, hard road below you.

Even two or three years after learning to ride a bike, lots of SPD kids are unsure on a bike. Think of a slow earthquake, or a canoe in choppy waters. Up goes their adrenaline and panic… and down goes their ability to focus on their balance.

And too often, down goes the bike.

Also, their proprioceptive sense is too weak (or too strong).

Proprioceptive = muscle strength and control = pushing, pulling, and lifting

You have to be able to control your leg and arm muscles to keep the bike going at a level speed. Slowing down too much, pedalling unevenly, or putting too much weight on one handlebar — any of these can all tip over the bike.

Going uphill is hard if the leg muscles are floppy. And shifting gears becomes something to panic over if your brain gets confused when it has to send messages to the hands and feet at the same time.

Not to mention that without a good sense of sound and sight, you’ll freak out in traffic.

Think about it. If you are concentrating on keeping your balance and sending all the right messages to your hand and leg muscles, there isn’t much room for other information. Anything can set you off.

Meanwhile, you are sharing the road with noisy cars that creep right up beside you.

You know they’re dangerous. You know you have to follow the rules of the road. But there is only so much room in the brain.

It becomes too much to handle.

Yet biking is an essential skill.

Bikes are the main mode of transportation for pre-teens and teens. They need to be able to get around, to go over to a friend’s house, or even to get to a job. So just avoiding bikes is not a good option.

Remember: an SPD kid can learn to ride a bike. It just takes more time to build up all those missing nerve pathways.

In the long run, it will do the kid a lot of good. Those nerve pathways can be used for a lot of different tasks, such as climbing a ladder, canoeing, or dancing.

So make it as easy as possible.

1. Don’t buy a cheap kid’s bike. These bikes are all the standard “mountain bike” style, where the rider is hunched over the handlebars. This position is difficult for balance. Go to a reputable bike store and find a hybrid bike. Hybrids use the old-style frame, which lets you sit more upright, but they have all the up-to-date gear and wheel systems. It is far easier to keep balanced on a hybrid than it is on a mountain bike. Also, it’s far easier to see the road ahead of you if you aren’t hunched over.

2. If possible, get a frame with a low crossbar. The high crossbar makes it difficult for the rider to stop — or to stand  on the pedals for going uphill. Your kid will feel safer being able to touch the ground.

3. If your kid gets confused by the hand-controlled gear shifts, then simplify it. Teach just three gears: the main one for flat roads, one gear up for uphill, and one gear down for downhill. That’s it. Forget the rest. If your kid can learn to shift just one gear at a time, then the skill is there for changing two gears later on. In the meantime, avoid big hills.

4. Ride every day. Ride together. It doesn’t have to be far. Short and successful is great. Can you bike to the store for a treat? To the lake to skip stones? To the park to go on the swings?  Keep it calm and positive.

5. Keep the tires inflated and the bike height-adjusted. SPD kids won’t necessarily feel when the tires are soggy, or when the pedals are cramped. They’ll just feel confused. Each confusing or unpleasant bike-ride is several steps backward. To keep things positive, keep them technically perfect.

6. Don’t ride in rain or cold, even a small amount. Remember, SPD kids feel cold and damp more than other people. So weather will add a new sensory irritant that you really don’t need. Bike only when it’s going to be successful, and avoid anything that will make it go poorly.

And if you think it’s bad when they’re learning to ride a bike…

Just wait till they’re learning to drive your car.

****

Judith wrote in with another suggestion: bikes without pedals.

Learning to ride a bike that has no pedals can bypass some of the motor issues so that the kid can focus just on the balance issues. You can view these European inventions in action on Youtube.

Breaking down the bike-riding task into balance first, then motor might be a brilliant solution for SPD kids.

How hard would it be to take an old kids’ bike and jimmy it to ride without pedals?

Asperger’s and consequences

Published November 13, 2009 by Nancy

In the heap of “defining characteristics” of Asperger syndrome, here is one that gets little press. And it’s one of the most interesting.

Asperger kids don’t learn from consequences.

If you are the parent of an Aspie, you already know what this means. But there are other people reading this blog. So I will explain it for them:

1. It’s a distraction. Punishments and rewards distract Aspie kids from the crime. They focus on the two events individually, not on any connection between the two. Once you give the consequence, the Aspie kid gives no further thought to the action that brought it about. So then what’s the point?

2. It’s distress. Punishments are distressing. And distress in over-sensitive kids is in itself a Big Hairy Deal. You’ll get nothing done now for hours. The punishment will take over. You’ll ask yourself who is really getting punished, you or the kid. Trust me, it can go on forever.

3. It’s abuse. Aspie kids see punishment as bullying. I do something bad (by accident), so you do something worse back (on purpose). You are bigger than me, so you are picking on me. You are  mean and abusive of a little kid. Etc. These are not just words, this is how they see the situation. Any learning opportunity in the consequence gets mired in the vitriol.

4. It leads to learned helplessness. If a kid can’t make the connection between an action and its punishment, then he/she can’t change and can’t avoid further punishments. Punishments just come at him/her, day after day. This leads to depression and anxiety, but not to changed behaviour.

In sum: You can have the clearest list of crimes and consequences taped to the fridge and enforce them without slip-up like the model parent you are. But six months later, it will still be taped there, you will still be giving out the same consequences, and nothing will have changed.

Got the picture?

I find this fascinating.

Because this is where it becomes clear that Aspies have a different kind of brain.

Even animals can learn from consequences. Stimulus, response, stimulus, response. Pavlov’s dogs salivating at the sound of a bell.

And heck, we know Aspie kids are smart. So why do they not learn from consequences?

Here’s a radical thought — maybe shaping one’s behaviour based on consequences dished out by someone else is in fact a sign of low intelligence. And holding your mind independent of the actions of others is a sign of high intelligence.

Sorry, but someone had to say it.

It’s like the difference between dogs and cats.

Dogs are pack animals. They bow to the alpha dog. They take punishments and learn from them. They know their place.

And everybody knows dogs are kind of dumb.

But cats refuse. Try making a cat to do anything it wasn’t going to do anyway. Try making a cat obey.

Cats are smart.

NTs are dogs. Aspies are cats.

1. NTs learn from consequences because they are pack animals. Aspies are not as embedded in the pack, so they don’t feel the pack the way NTs do.When you don’t feel the pack, you don’t feel the consequence-ness of consequences. They are just bad things that people do to you. Revenge. Abuse.

2. Aspies don’t get roles. To understand who gets to punish/reward whom, you have to be able to feel the roles and relationships. Little NT kids know that grown-ups get to give rewards and punishments to kids. Aspie kids don’t. They see people more as equals. Rightness and wrongness is not relative to roles but to kindness. Yes, it’s so beautiful. But not very handy for parenting.

3. Aspie kids can learn how one action relates to another, but only  if those two actions are truly related. They can’t connect an action with a parent-induced consequence. They know that the consequence is made-up. They know that it really doesn’t necessarily happen.

4. Aspie kids perceive the act of making up punishments as irrational behaviour. They think NT parents are nuts. At best, they will learn to put up with the consequences just to avoid the crazy parent behaviour that will follow if they don’t.

So what’s a parent or teacher to do?

You have to learn to think like a cat.

You can’t herd cats. You can’t train cats. But you can live quite nicely with cats. And if you do, they will be downright friendly with you.

My suggestions:

1. Focus on natural consequences instead of made-up consequences. If he is late getting ready for school and misses the bus, don’t take away computer time as a consequence. Instead, make him walk to school. Consequences that flow logically from actions make sense to Aspie kids. So even if they don’t like the consequences, the connections form in their brain. And that’s what’s supposed to happen.

2. Tape a rights-and-responsibilities list to the fridge instead of a rules-and-consequences list. Aspie kids need to understand how the pack works before they can figure out why on earth there are so many rules and consequences. Make up the list together with the family so that the kid gets to add in the rights and responsibilities that are important to him/her.

3. Criminal justice in the West is so stupid — these people have done bad things to others, so let’s put them in a box for a set amount of time, cut them off from anything that might keep them sane and healthy, and then suddenly let them out, and let’s do it all at our own expense, while the victims never get compensation for what was done to them — and these truly dumb ideas infect the way NTs parent. Time-outs are fine if they are to give the kid a break from a bad situation, but they’re not fine if they are a version of “doing time.” Taking away privileges is fine if the privilege is part of the problem, but not if it is just a random way to punish.If you need to post a list of consequences, then list how you are required to fix the problem rather than listing set consequences. If you have inconvenienced someone, then you have to do a favour for that person at their request. If you have made a mess, then you have to clean it up. If you have broken something, then you have to repair it or replace it. If you hit or hurt someone, then you have to apologize and ask the victim what he/she wants you to do about it. This is restitutional justice, rather than retributive justice.

4. Always ask yourself What are the consequences of this consequence? As in, consequences to me, to my family, to my class? If the consequence is that the kid will declare you a bully that picks on little kids — in front of the whole class — then no secret here, those ideas are infectuous with other kids. You’ll have a mutiny on your hands and possibly some phone calls from parents wondering what is going on. If the consequence is that you will lose lots of time dealing with the upset kid or further meltdowns, then that’s a pretty big consequence. Be a dog, learn from it, don’t do it again.

I’m talking about making sense here. Cat sense. Dog sense.

Do what we do best.

Good luck.

tics and video games

Published November 4, 2009 by Nancy

Do you notice that your kid’s tics are worse when playing video games?

Like, far worse?

For some kids, the computer/console is the only place where they do tic. But then afterward, they can tic for hours or even days.

Something’s going on there.

Science says tics are caused by the number of neurons floating around in the basal ganglia area of the brain. The basal ganglia is part of the brain’s brakes. In tic disorders, the brakes leak.

Greater use of the prefrontal cortex (the executive control centre) can help regulate the basal ganglia.

Meanwhile, neuroscience links tics to the sensorimotor rhythms (SMR), a brainwave pattern deep in the brain (hypothalamus area) that regulates the senses and muscles. When SMR is too low, the kid’s brain can’t control movement, interpret sensory information, or get a grip on anxiety.

Higher beta brainwaves can help restore balance.

So what do video games do?

For sure, they increase agitation. The more intense the concentration on the game, the more the kid gets sucked right into it. They lose touch with reality as they become one with the game.

Their beta brainwaves decrease.

Their use of their prefrontal cortex decreases.

Somehow the video game activity makes the brakes leak.

But is it the screen, or the video game?

Is it the light or the visuals from the screen interacting with the brain’s neurons, or is it the action and intensity of the game interfering with normal function?

This is an important question.

We know flickering lights can cause all kinds of brain disturbances. But what about nonflicker screens? Can light do it too?

Or does the brain go into a different mode when concentrating on a screen?

We also know that intense activities raise adrenaline, which cuts off a lot of the regular neurochemicals in the brain.

But are all games culprits? What about mild, low-action games like RuneScape? What about educational games?

Is it the act of gaming that does it, or just certain kinds of activity?

Watch this video of a boy ticking in front of his computer.

He’s very honest. And keep in mind that all he is doing is typing and reading on the computer (not playing a game).

Try making a video like this. It could help define exactly what is going on with your kid.

If the games are the cause:

Then you should expect to see tics during

• computer game playing
• Nintendo/Wii game playing
• Gameboy (handheld) game playing

But you should not see it for

• computer reading
• computer typing
• computer video watching
• TV watching

If the screen is the cause:

Then you should expect to see tics during

• computer reading
• computer typing
• computer video-watching
• computer game-playing
• Nintendo/Wii games
• TV watching

But you should not see it for

• Gameboy (handheld) game play (because they don’t have much of a screen)

Remember: tics wax and wane.

For a couple of weeks, there can be lots of tics. Then for a month, there might be none.

It is a good idea to record what changed when the tics reappear. But don’t be discouraged if you can’t pinpoint a cause.

Other things you can do

1. Help your kid become aware when he/she is ticking.

Making a video can help, but it will be distressing, so get full consent first. You can also put up a mirror beside the screen so your kid can check every now and then.

2. Help your kid identify how he/she feels about tics.

You need to help him/her frame it as “no biggie,” just as something to work on. Frustration, embarrassment, and shame are not allies in solving this issue.

3. If computers or games are the big trigger, then you need to make a decision together on how to handle it.

One option is putting the equipment away for six weeks in exchange for other activities.

Good luck on that one. Many ticky kids don’t have outside activities or even a lot of friends.

Another option is a timer limiting exposure, following by a relaxation exercise to blow out any pent-up tension.

4. Get checked out for allergies.

Many parents have reported that pollen, milk, corn, and wheat seem to trigger tic episodes.

Some parents are convinced that mercury exposure is a cause of tics. I am no expert here. Studies in Denmark have shown that tic disorders are on the rise along with autism and hyperactivity disorders. So there is some kind of environmental thing going on, we just don’t know quite what it is.

5. For mild facial tics, devise an alternative tic for the kid to use instead of the real one.

This is a central concept in Habit Reversal Therapy.

If the tic is a grimace, make the alt tic a yawn. Encourage the kid to replace the real tic with the alt tic as it is happening.

This helps increase awareness, gives a measure of control, and helps extinguish the tic.

shopping with Asperger’s kids

Published November 1, 2009 by Nancy

Don’t.

As in: Don’t take Asperger kids shopping.

1. They don’t like crowds, noise, new sensations, and confusion.
2. They aren’t patient.
3. Most of them can’t sit still. They are either running around like a bull or curling up in a bored ball wailing to go home.
4. They can’t make decisions on the fly.

They can learn shopping when they’re older, when it’s their own shopping they’re doing.

In the meantime, you do the shopping and leave the kid at home.

Here are some suggestions:

1. Shop only where you can make returns. Plan and measure before you go. Take samples to compare for size. Buy, try on at home, and return the undesirables the next day.

2. Shop at used clothing stores (provided they have return or exchange). You can get more variety and more soft, comfortable textures in one shopping trip, which means a better chance of success. The low price tag leaves more money leftover to pay for those occupational therapy and social skills programs.

3. Shop online. This you can do together. Online clothing tends to be higher quality fabrics with better fit than Stuff-Mart clothes. Making decisions about online shopping helps your kid learn to shop. But make sure your kid learns never to make an online purchase without your consent!

Sometimes you just have to drag your kid to the store. Shoes cannot be bought without trying them on. Any Asperger kid will tell you there are a hundred possible points of discomfort in a single shoe.

Here are some ideas for making these shopping trips easier and faster:

1. Together, check the store’s website the day before. Try to identify exactly what you want and exactly what you need to avoid.

2. Talk about what happens in the shoe-buying process so that your kid knows what to expect. For example, make sure he/she knows that you will be trying on several shoes, not just one pair, and that you don’t just buy the first shoes you try. Explain how you have to check shoes carefully for comfort before buying them.

3. Bring a water bottle and something small but chewy to nibble on. Chewing and sucking on a water bottle helps keep your kids’ senses steady and calm. This will reduce outbursts and wailing/whining.

4. Bring only one kid at a time.

5. Get some quick exercise before leaving the house. Bouncing, running, wrestling — anything to get the senses awake and alert. If possible, walk to the store.

6. Limit your shopping to two stores. If you don’t find shoes at either store, you’ll try again next week.

7. End on a high note. Like an ice cream cone.

asperger’s and groupwork skills

Published November 1, 2009 by Nancy

Is it just me, or is the phrase “good groupwork skills required” simply code for “no Asperger or ADHD kids welcome”?

I’ve seen too many special programs targeted at high IQ kids that have this written into the description.

Why is it there?

Some possible reasons:

1. The instructor plans to foist all the work onto the kids, so those kids need “good groupwork skills” to do the teacher tasks.
2. The instructor doesn’t want to deal with discipline problems. Kids with “good groupwork skills” are usually nice, well behaved kids from middle class families — ah, sit back and sip on that coffee while the li’l darlings work!
3. The instructors want a uniform demographic in the classroom so that there are no outliers, no fringes.
4. All of the above.

Am I being too unkind here? I honestly couldn’t think of anything else. What else good are “good groupwork skills”?

“Good groupwork skills” is also code for “there will be screening, and you might not get in”.

No secret here, Asperger kids don’t exactly ace screening.

Screening eliminates “undesirables.” Nobody in their right mind would pick Asperger kids. Teaching Aspies is hard. They don’t get the whole hierarchy thing. They don’t have nice manners. They talk too loud.

Screen ‘em, baby, screen ‘em.

If “good groupwork skills” means anything beyond the code, then what?

The word “good” is already subjective. It means “groupwork skills that teachers like.” It means “groupwork skills that make classrooms easy and comfortable.”

Pablum. Beige.

It also sort of means “groupthink” because the idea of conformity is right there, a creepy shadow behind the words.

But, sigh, wouldn’t it be great if “good groupwork skills” also meant “edgy, innovative, bizarre originality”? Or “thorough precision, shared among many”? Or “happily playing in the sandbox of our minds together”?

“Good groupwork skills” never includes “weird.”

Don’t get me wrong, I’m not putting down “nice.”  Nice is good. Nice is useful. Heck, custard is nice, and I like custard. But custard never brings down the house. Custard never takes the ribbon, raises the bar, dreams the impossible dream.

Besides, groupwork skills can be learned.

Yeah, and they can be taught too. Problem is, nobody ever teaches them.

Why screen out kids for something that could just be taught to them?

I wonder the same thing myself.

Here are some suggestions for making specialized programs inclusive for Asperger and ADHD kids.

1. Define who the program is for — by identifying what kids’ needs it fulfills (for example, the program provides stimulation and enrichment to high IQ kids). Don’t define it in terms of the program’s needs (for example, the program is intended for kids with good groupwork skills). Remember: programs don’t have needs, kids do. You can always change the program.

2. Devise an application/selection process that finds the kids that fit the definition. That’s all it has to do — find those kids.

3. Beware of screening processes that masquerade as application processes. Look for code. Look for subtle exclusions. Look for requirements that are more about raising the profile of the program, or creating a showcase item for the board members to brag about, than about providing specialized programming to kids who need it.

4. Put it in perspective. Teaching high achievers — the kids who get straight As — is a pleasant way to pass the day. [Think custard.] But quirky gifted and creative kids — who don’t care if they get As because they’re thinking about different things — will blow your mind. They move in planes you haven’t even imagined yet. Easy to teach, no. Ride of a lifetime, yes. Wear a seatbelt and hang on!

5. Teach groupwork skills at the beginning of the program. Teach it like a course. Give the theory, practice, essay, and exam. After that, they’ll have it.

6. Give yourself a mission. Reach out to misunderstood, lonely, anxious, bullied, and over-active kids who have no place to go. Help them feel for the first time in their lives: I belong here.

7. Remind yourself that any kids’ program instructor who has to rely on “good groupwork skills” is admitting to being a rank amateur. Or just a lazy bum.

My opinion.