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.

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.

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.

Asperger’s, eating, and self-esteem

Published August 12, 2009 by Nancy

Asperger people often have limited diets because of their mouth sensory issues. But with a bit of practice, they can teach their mouths to handle a wide range of nutritious foods.

Here’s the equation:

Food = Nutrition.

I get that. We all get that.

So then why is this post about Asperger’s, eating, and self-esteem?

A good question.

The answer: because this topic echoes through all the Asperger online forums like Seinfeld reruns.

Parents everywhere are hand-wringing over how their Aspie kid needs to socialize with peers to make friends and therefore needs to be able to eat the same foods as everyone else.

Once said kids learn to eat, say, hot dogs or pizza, that will raise their self-esteem. They will be able to fit in with their peers, and everyone will live happily ever after.

So here’s their new equation:

Food = Self-esteem

Right. So you ask, who’s to say that a kid’s self-esteem could not be affected if he/she has learned to gag down a piece of pizza on command? That’s quite a skill.

A skill, yes. But is it self-esteem?

Linking food  to self-esteem strikes me as a bad, bad idea. Like a mini eating disorder on a bun. Or a depression treadmill Lite.

Doing things that don’t feel right just to fit in with peers is a fake life.

“Don’t you feel proud of yourself for eating that slimy hot dog, just like all your friends?”

“Don’t you feel proud of yourself for smoking that whole cigarette, just like all your friends?”

Self-esteem, my eye.

What’s the kid supposed to say in response? They say what they’re supposed to say: Yes. And the parents feel proud of themselves for having helped their kid fit in.

Nice job.

Listen up. A kid has to have self-esteem about who he/she is, not what he/she eats.

Being able to put together a simple and nutritious lunch and eat it is an accomplishment because it is a step toward a life of health.

Being able to get peers to understand that you prefer eating an apple to eating barbecue chips is an accomplishment because it is a step toward a life of self-advocacy and personal power.

A parent’s job is not to mould an Asperger kid into a fake NT kid and not to teach them that they have value only when they are imitating their NT peers. It’s to help that kid build a full, rich, and happy life around who he/she is.

If you are a parent reading this, ask yourself: Is this about your kid’s self-esteem? Or yours?

Asperger’s and classroom management

Published August 11, 2009 by Nancy

Are you a teacher?

Then listen up.

Chances are you’ve had or soon will have an Asperger kid in your class. By the middle school years, these kids know they are different and often have self-esteem issues because of the pressure to conform.

Give up on conformity.

Asperger kids have unique value because they see the world differently than others. Focus on this talent in your classroom.

Here are some tips (and yes, I am a middle school teacher):

1. Go visual. Asperger kids tend to be visual learners. Think charts, graphs, tables, schedules, diagrams.
2. Give them a heads-up before you change anything related to the routine. Tell them what will be different and give a suggestion about what they should do.
3. Keep instructions short. One thing at a time.
4. Asperger kids are good at tasks that require micro-focus, whereas most kids at this age can’t focus more than a gnat. Sure, give open-ended and creative work that the average kids can do, but also give the deep-concentration work that Asperger kids can do. Be fair.
5. Be aware of sensory overload. Too much of anything (excitement, noise, frustration, movement) creates a sensory build-up in the kid’s body. This is a time bomb. Get tips from the parents on how to avoid sensory overload and how to defuse the bomb before it blows.
6. Let the kid leave class whenever he/she wants. Designate a go-to place. Don’t draw attention to these exits. This is the kid taking charge of the problem and doing what needs to be done.
7. Reserve extra consequences for kids who bully, tease, or treat Asperger classmates unfairly. Yes, that’s not fair. But kids have to learn not to pick on those who can’t defend themselves. When the costs are high, kids won’t do it.
8. Talk about good books on Asperger’s, meltdowns, sensory issues, etc. with the parents. Read the same books and try some of the ideas together, at home and at school.
9. Asperger kids argue with the teacher. Get over it. They’re not trying to be disruptive – they are disruptive. They see all people as equals, and they don’t get the power structures and hierarchies in the real world. Here’s a suggestion: If the kid is arguing and becoming disruptive, give the kid a piece of paper and tell him/her to write it all down, and you will discuss it later.
10. Don’t expect the Asperger kid in this year’s class to be anything like the Asperger kid in last year’s class. There is a lot of variability in who gets identified as Asperger. All the designation means is that this kid is not going to be like the norm, so special strategies are necessary.

Links
A very thorough article on the OASIS website

A list of articles related to education

You can also google some of these teaching approaches: TEACCH; SPELL; Higashi Daily Life Programme; Facilitated Communication; the Picture Exchange Communication System (PECS); and The Options Approach (Son Rise).

Final tip: During conferences with parents, be sure to ask the parents if either of them are Asperger too. Most won’t volunteer the information. Conferences can wind up getting testy simply because parent and teacher can’t understand each other. It’s better to clear the air first.