Nectarines and Mirrors: Neuro-Pruning and Neuro-Mirroring

In a recent post about some of the (many) little known reasons why autism diagnoses are increasing, I dangled a bit of bait for another topic about autism.  I said, "What do nectarine farming and mirrors have to do with autism?"

If you've ever owned a deciduous fruit tree like a peach or apple or plum, you may know that in order to allow the tree to put its energy toward good fruit, you have to thin the set on the branches.  I've watched my dad, a nectarine farmer, time and time again spend hours pulling off the tiny beginnings of fruit so that the tree's resources would go into a couple of really fat, juicy pieces of fruit instead of a dozen weenie, sour, blah pieces.  Just last week I saw one of our family aprium trees with thousands of tiny green apriums littering the ground, and my dad was just about to burst with the promise of what remained on the tree.

Before I get into the science of the brain here, may I remind you that I was a liberal arts major?  Like, I think I had one science class in college.  So my knowledge here is sketchy at best, and based on several articles I've read on the subject.

After the brain has formed, it develops a network of neurons that have little branches--some that send and some that receive communication.  They work together to understand what's going on, what the body needs, and communicating that to the brain.  Basically.  That connection between the senders and receivers is called a synapse.  Now, when Baby Brain is making all these synapses, it generally makes way more than it needs.  The ones that don't get used gradually get pruned over time--they aren't used, they stop working, they die off before they become permanent.

What happens in an autistic child's brain is that not enough pruning goes on, and the child's brain retains way too many synapses.  So the child is taking in far more neurological information than necessary, causing different kinds of chaos in the child's brain function and behavior.  You know how one of the hallmarks of an autistic child is that they can't look you in the eyes?  Imagine that Jack Nicholson suddenly walks up to you and grabs the back of your head and locks eyes with you.  WHOA.  Intense doesn't really even cover it.  Guess what?  This is what looking someone in the eyes feels like to an autistic child ALL THE TIME.  Every single time.  Yeah, I wouldn't want to have that kind of intensity all day long, either, whether it's Jack Nicholson or Chris Pratt or Mickey Mouse.

And that's just ONE example of how intense it is to have too many synapses.  It's one reason autistic kids are rigid--it's so much more comforting to create something you don't have to constantly process.  You know that thing, and it feels SOO good to just experience and BE in that one thing.  It's why autistic kids have meltdowns.  They're totally overwhelmed.  It's why they cover their ears--it's like listening to Count Bassie and Nirvana and Wagner all at once.  It's why they have texture issues.  Etcetera.

It's also one of the reasons autistic kids are so intelligent.  They have the capacity for so much smart.  The problem is they are overwhelmed with just keeping their world organized enough to function, so we often don't get to really see what their intelligence looks like.

Does that make sense?

On to mirrors.  All of us are equipped with what are called mirror neurons.  When we see other people smile, frown, grimace in pain, etc., a very small part of our brain says, "I recognize that" and responds with a teeny-tiny dose of that same reaction.  It "mirrors" what others experience.  Empathy.  It's how we get along in society.  Go back to Psych 101.  When someone ahead of you about 20 feet is walking toward you, without even realizing it, you each pick which side of the sidewalk you're going to walk on so that you don't collide with each other.  You notice that someone seems bored with your conversation, so you wrap up the topic and change the subject.  It's how we navigate each other.  But autistic kids have malfunctioning mirror neurons.  They are literally blind to these social cues.  They don't know you're bored, that you are offended by their bluntness, that you are sad or angry.  What I've found amazing is that when I tell my girl, "What you said really hurt my feelings."  She is often immediately responsive to me, and the whole pitch of our conversation changes.  Over time, she has learned to connect things like my tone of voice or posture to my saying, "that hurt my feelings," and her neurons are learning to compensate and send signals to her brain.  She's no expert, but she is learning!

So that, my friends, is what nectarines and mirrors have to do with autism!

Hitler, Austria, the 80's and Autism

My post on Facebook on April 3.

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Okay, by request, a bit more on the story of what impact Hitler, Austria and the 80's had on the more recent increase in autism diagnoses.

This is a summary of a summary of part of Steve Silberman's book, Neurotribes. In the early part of the 20th century, Hans Asperger (recognize that name?) of the University of Vienna was pioneering modern research in autism, which included identifying it as a spectrum. He also identified links to high intelligence and that it is not a rare condition.

Enter Hitler. Remember how Hitler wasn't really pro-disability people? When he took over the University of Vienna, he cleaned house and appointed his own leaders. Focus was shifted to eugenics. Even Asperger's research before the takeover had begun to go "light" in order not to point the finger at a new category of people with disabilities. The impact of this shake-down lasted until the 1980's.

Oh, and did someone say something about the 80's? Remember in the 70's and 80's particularly how the tension of working moms played out? Well, with research deficit post-war on the origins of autism, people believed that autism was the result of bad parenting, especially mothers. Because mothers needed more stuff to feel guilty about.

In many ways, I think we are still in the infancy of understanding autism, knowing how to teach, parent and care for those with autism, and I think it's important to realize that we have a lot of learning to do still. There are factors involved that we really may not understand yet. In fact, today's cliff hanger is this: What does farming nectarines have to do with the brain of an autistic child? And what do mirrors tell us about how autistic kids think?

Autism Awareness Day

I actually had no idea that Saturday (April 2) was Autism Awareness Day, but happened to see someone else posting on it.  I actually hate Awareness days, because most of the time it essentially says, "Be Aware," and I'm like, "Aware of what exactly?"  Then I feel guilty because I didn't do extensive research on whatever it is I'm supposed to be Aware of.  Or I (erroneously) get this weird feeling that the people asking for awareness want me to either feel sorry for them or maybe somehow elevate them to some superior level because of their suffering.  Regardless, I just haven't felt like Awareness Days have given me a lot of useful things to be aware of as Average Joe(sephine) Populous.

So I spent a lot of time over the last year thinking, What exactly would I want someone to be Aware of when it comes to Autism?  How can I be helpful to people who feel helpless and weird around autism?  So I put together a list of what came to mind, and posted it on Facebook.  The response took me by surprise--incredibly supportive, and even asking for more.  Here is the list I posted:

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1.) "If you've met one autistic kid, you've met one autistic kid." Kids on the spectrum look vastly different, so it's okay to feel like you don't know what autism actually is, and no one expects you to know everything about it. Most of the time, you're going to notice that someone is quirky, sometimes awkward, different.

2.) If you think your kid might fall on the spectrum (or have a similar disorder), don't be afraid to go find out. A diagnosis is not a stigma in my experience. It's the gateway to answers and the kind of help you didn't even know you needed. And it's not a death sentence. I've found more joy than I ever expected because of the things we've had to work through. Also, early intervention is the key to progressive awesomeness.

3.) If you don't know what to say to parents about their kid, say, "tell me more about your experience sometime." It's tempting to say, "Oh, all kids go through x (insert here: tantrum, low filter, awkwardness, struggle)," to try to make them not feel so different, but understand that it actually minimizes their struggle and makes a parent feel like they are just whining.

4.) Speaking of tantrums, understand that a typical tantrum and a meltdown look the same, but are as different as mud and chocolate. An autistic meltdown is very complicated in origin and resolution. I'll tell you more about it if you're interested.

5.) If you don't know how to contrast an autistic kid from other kids, use the word "typical" kid. I know you feel bad when you say "normal." I say it too and I feel bad too.

6.) Causes of autism are still being studied and could be a combination of genetics, gestation and other factors. But it's really, really clear now that vaccines do not cause autism.

7.) The rise in autism diagnoses in more recent years has way more to do with Austria, Hitler and the 80's than any other factor. That's also another great story for another time.

8.) Because autism is a neurological disorder, not a disease, there is not a "cure," but rather a multi-faceted approach to help an autistic child learn healthy coping and compensating strategies.

9.) Sometimes it is just HARD to be a parent of a kid on the spectrum. It's super hard to explain why sometimes, too, but it is mentally taxing, emotionally straining, and you don't know how to help your kid without losing your mind. Sometimes, for really long stretches, it seems like you're going backward and every single option is the wrong decision. And it feels like everyone thinks you are just a really sucky parent.

10.) Because of the incredible amount of work you have to put in to understand your kid, you have the opportunity to be come close to your child in a way you may never have had otherwise, and you find a person so beautifully and wonderfully made that it continues to astonish you.

So. I'll be straight with you. Autism sucks. It's a neurological disorder, or rather several disorders working together. It makes life very difficult to navigate. But everyone has something difficult in their life, and this is our difficult thing. We have seen God work in and through it in ways we could never have expected or known to ask for, and seen his goodness in sharp focus. So there you go, friends, now you are Aware! Have a great April 2!

The Earles on April 4th

The story most of you have been visiting our blog for is Steve's accident on June 14th and his subsequent recovery.  I'll give you a little update on that below.  But I'm sensing that our family has some other stories to tell.  Most of you know that our daughter has High-Functioning Autism, which includes Sensory Processing Disorder, Sleep Onset Disorder, and either true ADHD or ADHD-like symptoms.  She really is an incredible kid, though she may drive me nuts much of the time!  So for her sake, I won't talk a lot about her--she has her own story to tell one day and I'd love for her to tell it in her own way.  Or not tell it.  That's her right.  What I'm finding is that some of my own stories are burning to be told, some of the learning that I've experienced could be so very helpful to others.  So going forward, I will be adding that aspect of our lives to the mix of blog posts.  You know... when I get a flurry of creative energy and actually feel like I can write once every 6-8 months!

The update on Steve is very similar to the update in August.  He continues to make micro-improvements.  This is really, really good.  I see his balance improving, his ability to turn, step over things, lift things, avoid fast-moving objects (i.e. Søren).  His feet are still terribly curled up, he has crazy-looking marks on his legs because of circulation issues.  He has some other functions that are still impaired.  But we see improvement.  It's a really long story, but we have finally located THE ONLY neuro-PT in all of Kaiser's So-Cal network, and he has an appointment with her on Friday.  He has not been assessed by a medical professional in a really long time, and we have a lot of questions.  Things like, how worried should we be about his circulation?  Should we be doing more for his toes?  Is his compensatory walking style going to affect other joints and muscles negatively?  And most importantly, will Kaiser PLEASE invent a cooler-looking cane??

He has recently stopped going to Rancho Los Amigos for FES bike therapy because again, we really don't have an avenue to consult with someone about how effective it is, how often he should go, etc.  It's also a 9 hour a week commitment (driving, working out, driving), and it's just super restrictive on his schedule without knowing how effective it is.  We have, through a generous donation, received a small, home FES machine, (basically could stimulate his muscles while he sits and works, etc.), but we really need the neuro-PT to talk through a plan on how to use it.  So instead, he spends a half hour on the treadmill in our garage every day and half an hour on his kirte-kinetic (stationary) bike.  I really believe the consistent blood-flow to those areas is making a difference.  He's continuing to stimulate muscle memory, and while I'm no doctor, I can't help but think the blood flow is helpful for nerve re-growth.

We still have moments where we are just sad about what has been lost.  But that's definitely not the prevailing feeling.  We are accepting things that may never return, and we're thankful for so many things that have returned.  Last week during Spring Break, we went hiking in Yosemite National Park.  He uses hiking sticks (they look a lot like ski poles) and basically uses his arms to get him up steep hills because his glutes, hamstrings and calves are still ineffective for that kind of work.  We hiked to the bridge below Vernal Falls, which I believe was the most strenuous hike he's done to date.  And he is regularly getting on his bike to ride around with Søren and Lucy.  We've decided we will bring all our bikes back to Yosemite sometime this Fall.  And yes, we all wear helmets.  You should too.

Thank you for those of you who continue to pray for us.  God has been so very faithful.  This post is already too long, but at some point I really want to share with you how God walked me through my own recovery from what I now know is mild PTSD (post-traumatic stress disorder).  Many care-givers experience this and have no idea this is what is happening to them.  They are focused on keeping it all together.  But you can't do that forever--your body and mind won't allow you to push it beyond capacity.  The short story is that a couple of months of therapy with a trusted Family Therapist was nothing short of restorative and life-giving for me.  The long story--that's two posts at least!

Wishing I could hug you all.