life after Asperger’s

Published August 15, 2009 by Nancy

We’re not really supposed to talk about this.

Yet with so many Asperger (and ADHD) kids doing neurofeedback now and eliminating their neurological difficulties, we end up at a place that hasn’t been defined yet.

Post-Asperger syndrome.

Or Post-ADHD. Post-Tourette’s.

What happens when you remove the Aspergerism from a person who has been Asperger since forever?

Here’s what we’ve discovered:

1. It doesn’t suck. That is, it doesn’t suck the personality right out of you. Personality remains. Identify remains. You are still you. You feel like you, only it doesn’t suck. It’s a happy thing.
2. You built a personal infrastructure around your Asperger difficulties. Think social habits, sensory habits, ways of thinking and behaving. Some are part of Aspergerism, and some are accommodations and byproducts. These tend to linger.
3. Habits and ways of living/thinking have to be unlearned. It takes a while. Expect a lot of quiet surprises. Little omigod moments when you realize you don’t hate this , or you aren’t afraid of this, or you don’t need this anymore.
4. Some aspects of Aspergerism allowed you to be <ahem> self-centered. Or at least what other people consider self-centered. Time’s up now. There are no more Get Out of Jail Free cards. With the neurological difficulties gone, you have no excuse. Do Unto Others.

Here are some thoughts for parents of post-Asperger kids;

1. Remember that each age has its own issues and hormones. Post-Asperger kids will have these as well as any post-Asperger issues. Remember that NT teens can be extremely annoying even without Asperger’s.
2. Social skills and concepts that they didn’t learn while they were seeing through the cloud of Aspergerism they can learn now. So find good books on social skills. Something with a title like “What Did Everybody Else Learn While I Was Trying to Figure Out Why The World Was Yelling At Me”. Look for teaching moments.
3. When they fall back into old patterns, remind them that they don’t need those habits anymore and that the world now expects more of them.

heart-rate variability

Published March 30, 2009 by Nancy

We saw the doctor at the neurofeedback clinic over (Canadian) Thanksgiving.

He said good work etc., but we need to shift the focus onto heart-rate variability.

HRV involves using a breathing belt around the waist and a pulse monitor on the finger, instead of electrodes attached to the head. The computer presents two graphs: one for breathing, one for heartrate. The object is to get the rise and fall of these two graphs to match.

To do this, the child has to find the optimal breathing speed, which is usually slower than normal. When the heart-rate functions in response to the breathing, instead of independently, then the sympathetic and autonomous nervous systems are working in synch.

The child will feel calmer.

With a little practice every day, the child learns to feel this in-synch rhythm and feels more in control. In a very short time, staying in synch becomes natural. Stress and anxiety go down, and the child is calmer.

neurofeedback update for December

Published December 20, 2008 by Nancy

We are hardly remembering to do neurofeedback and heart-rate variability training now. Occasionally we squeeze it in on a weekend.

Phasing out the meds has been a breeze so far. We are now at 1/8 dose and should be off everything completely next week.

We haven’t seen much to be concerned about.

I pronounce the experiment so far a success.

neurofeedback basics

Published November 28, 2008 by Nancy

So then, what is this neurofeedback thing?

In five sentences:

1. The brain produces several overlapping patterns of electrical wave currents.
2. These change as the brain grows from babyhood to adulthood.
3. Normal wave patterns produce normal brain activity and behaviour.
4. Abnormal brain waves (too high or too low in certain categories) produce abnormal brain activity and behaviour.
5. Though practice, the brain can teach itself to change its wave patterns.

What are these wave patterns?

Here are the main ones, ranked from largest waves to smallest waves:

• Delta Waves (.5 - 3 Hz): A slow wave pattern of infancy. No thought, just existence.
• Low Theta (3 - 5 Hz): Tuned out and sleepy.
• High Theta (6 - 7 Hz): Inward-oriented thought, as when you are trying to remember something. Not focused on external situation. Can be a creative type of thinking but if chronic can cause attention problems.
• Low Alpha (8 - 10 Hz): Inward-oriented thought, in the style of meditation. When an adult has closed eyes, he/she is often in low alpha.
• High Alpha (11 - 13 Hz): Calm awareness and attentiveness. Readiness. High alpha is often the dominant wave pattern in athletes and people with high intelligence.
• SMR (sensory motor rhythm) (13 - 15 Hz): A deep wave pattern connected to the sensory-motor system. High SMR correlates with calmness, alertness, and focus. Low SMR correlates with agitation, impulsivity, anxiety, and sensory processing issues. It may also be related to tics and involuntary movements.
• Beta (16 - 20 Hz): Beta is the concentration wave pattern. You use it to concentrate, think, analyze, and learn. It tends to be low in people with ADHD.
• High Beta (19 - 36 Hz): Associated with anxiety, worry, emotional intensity, ruminating, addiction, obsessions, and paranoia.

What is the training?

Neurofeedback training is EEG (electroencephalography) with the techniques of operant conditioning. Electrodes link the child’s brain to the computer, which analyzes the brainwave patterns in real time. The child plays on-screen games using only brainwaves to produce results. The trainer rewards the child for any good progress.

At first, the child has no idea what to do to produce results. Eventually, he or she starts to use subconscious techniques for holding up a brainwave or suppressing it.

The learning all occurs at a subconscious level.

How long does it take?

ADHD therapy focuses on reducing the Delta-Theta waves and raising the Beta waves. Someone with a mild form of ADHD can “fix” their brainwave patterns in as little as 20 hours. More typical forms of ADHD can be trained out in 20-40 sessions. Some ADHD children have very persistent brainwave patterns and may never entirely train it all out. But these children normally end up reducing their medications to very low levels.

Tourette’s therapy focuses on raising the SMR levels. Tourette’s can be trained out in 20 - 40 sessions.

Asperger Syndrome therapy focuses on many different wave patterns, since all ASD kids are different. Expect a minimum of 60 sessions before seeing any signficant results. Best results often occur after 100 hours or more.

day of the sandwich

Published November 20, 2008 by Nancy

I was going to call it “Breakthrough Day.”

We had been told that by around 60 hours of neurofeedback training, we should start seeing some results.

Controlling brainwaves is a lot like riding a bike. A lot of nothing happens, just floundering around, till suddenly you’re up and balancing and moving forward.

It was like that, after exactly 59 hours of training. It was August 14, 2008.

He sat down and focused on the game, no fidgeting, no complaining, no goofing off.

He benchpressed those delta-theta levels and the SMR levels into the normal range without sweat. His scores by the end of the brief session were Olympic material.

Then at supper, he stunned us all. I had made some turkey salad changes and shrimp, two things he would never eat, even in the face of starvation.

But on that day, he asked for a sandwich.

And then he ate it.

All.

Then he asked for a shrimp, “just to try it.”

We blinked stupidly several times, still reeling, then handed him one.

He said it wasn’t bad, could he have another.

We know it as The Day of the Sandwich.

The turning point of the year.

The next day, we started phasing him off his meds.

Trust me, you would have too.

breaking the mold

Published November 7, 2008 by Nancy

Neuroplasticity is one of those words to have in your lexicon when you need to impress.

It means the brain is play-dough. We can mold it and reshape it.

Don’t believe me? Over the past 20 years, research has debunked a lot of the myths about the rigid brain.

Remember when you learned back in college that the number of brain cells you had by a certain age was fixed? That you never grew more brain cells?

Wrong.

You have brain stem cells in waiting all the time. The trick is to activate them and make them repair damaged nerve cells.

Remember when you learned that each part of your brain is specialized and controls one part of your body?

Wrong.

Brain parts can learn new functions with enough motivation and training. Sure, there are a few key parts of the brain that aren’t interchangeable. Damage to these parts is permanent. But anything else is trainable.

Did you learn — as I did — that “genetic” differences such as ADHD, Asperger’s, etc. can’t be fixed?

Wrong.

With specialized training, these brains can be taught to work around whatever problems they have. Lazy parts can be taught to do their job, overworking parts can be taught to chill out, and connections can be made where none existed before.

Of course, the earlier this is done, the better. But even adults can reshape their brains.

Reshaping can mean changes in the size or shape of the brain, not just the connections.

what to expect with neurofeedback therapy

Published September 29, 2008 by Nancy

In April, we started neurofeedback training.

So what’s it like?

The kid goes into the centre for long assessment with lots of electrodes attached to the head. The computer shows lots of wavy lines and graph bars. Because I had read a book or two on neurofeedback, I could read the graphs a little. The differences between normal and not normal are subtle.

The centre diagnoses which brainwave patterns are suboptimal. These should match up with the child’s symptoms. For example, an ADHD kid with poor focus should have high delta-theta waves and low beta waves. An SPD kid with anxiety should have low SMR waves. Etc.

After that, you do weekly or biweekly training sessions. Three electrodes are attached, and the kid plays electronic games using just brain waves. The kid gets rewarded for improvements. After a long while, the brain gets “trained” to produce the right wave patterns. And symptoms diminish.

Because we live a distance from the centre, we bought the equipment, got training, and learned to do it ourselves.

It’s not cheap. But then, nothing is.

We’ve had to back a lot of rewards into the training. The kid collects tokens to be used to buy new computer games, and he gets a treat at the end of each session.

So how’s it going?

Over the spring and summer, we logged almost 80 hours of training.

What we have noticed:

• obvious increased control over brainwave patterns, observable in the games
• significant reduction in anxiety
• reduction in attentional issues
• improved self-control

At the end of August, we felt confident enough to reduce meds. We have reduced them to 50%. But we are noticing adjustment issues, so we are leaving it at that.

For now, we are continuing the sessions on weekends.