This is Autism...

As every member of our community says, "If you've met ONE person with Autism, you've met ONE person with Autism."  Autism is a SPECTRUM "disorder" because it is effects every person so very differently. I tend to think is Autism (and life) as a pointillism painting, or like Connectiles (made by Project Adventure or Wilderdom Store)... each point is complete, whole in and of itself, but becomes glorified and meaningful when it is placed within context.  I can inherently ONLY speak to how Autism lives with us, in our family...

The story of how we got a diagnosis convoluted and painful, like MANY families.  If you're interested in all the gory details check out our Facebook Page JT's Journey and read the Notes.  Someday I am sure I'll compile them onto a book - but this is not that day.  To summarize:  We bought into the fear and doom.  We were afraid we would scar him for life with a <<LABEL>> (hear that in an echo-y voice from a horror movie), and we were afraid that he'd be a victim of society if we didn't (no supports at school, no supports when he turned 18, him stuck a dependent his whole life).  We sought a medical diagnosis, feeling that it was more "legitimate" that an educational one (which we found to be True), and found it useless in the educational system.  We found a convoluted and antagonistic relationship between the medical establishment and the educational establishment, and felt shafted.  We tried to be cooperative, informed, and involved.  We were warriors and beseechers, to no avail. We rushed into intervention preschool, and stayed in school to start 1st grade, but it was not a situation that was healthy or sustainable for us. A part of that is our Autism, but a part of that is just our general community.  (As time passes we meet more and more members of our community who find the schools unable to create an environment where their "normal" kids thrive either.  We eventually opted to homeschool.)

The medical tale is a reflection of our stress with the educational one.  Our original diagnosis was "Asperger's" or "High-functioning", but it was also called "Severe Asperger's" by more than one therapist we saw.  Our Autism includes language, so we are considered "lucky", and most adults find my kid to be pretty entertaining.  He uses LOTS of language, with advanced vocabulary and creative character developments.  There's not too much plot action, but man can he regale you with detail!  We noticed from an early age that understanding all that language took a LOT of detective work from us.  Much of it was recited (echolalia is the clinical term) from TV, or radio, or books, or conversations.  We needed knowledge of the original context in which he heard it to try to divine meaning.  Over time it became "scripting", and that evolved into more sustained/ original conversations.  But do NOT get the idea that having a conversation with this child is "normal".  Much of his info is still recited from National Geographic - more of a dissertation in nature, not a give and take conversation.  As he has grew into playing with his sibling, he often told her exactly what she was supposed to respond.  He often becomes overwhelmed with distress about a particular idea and it still takes lots of detective work to find the association that is causing him the distress.  Over time the pediatrician has changed the label from scripting to stuttering.  He starts sentences over all the time.  He talks to him self almost incessantly, a running narration of his actions and mind wanderings (very useful when he was younger - he would inadvertently announce every time he was about to open something he wasn't supposed to.  As he's aged the leaps are harder to follow.)  And he LOVES accents - has gone through periods where he spoke with an Aussie accent (Thanks to Ice Age Dawn of the Dinosaurs), a Scottish accent (Thanks to Open Season), and kind of Transylvanian accent (Thanks to Phineas & Ferb).  He tries on LOTS of different pronunciations...  It has been particularly useful in helping him cope with his sister's Auditory Processing issues and slight language "delay" (she was missing some letters for a while).

We have had 4+ years of occupational therapy (OT).  He kinda learned to bounce & catch a ball.  He sorta learned to skip.  He eventually learned to tie shoes.  He still has not conquered riding a bike or unbuttoning his pants.  We have finally decided to take a long break from therapy so that he stops internalizing that he is "broken".  My boy is charming, but definitely awkward.  Dyspraxia is the clinical name.  He has a "motor-skill delay" - he just looks like a puppy all the time - like he's got too many legs, or like he is trying to operate his body from a remote location.  Sensory Processing Disorder is another "problem" OT was trying to "fix".  Hand dryers in public bathrooms were an object of abject fear for us for a loooooong time.  Eating is STILL a Contact Sport for us on many days.  We see LOTS of flapping and pacing, and LOADS of full contact cuddling.  One therapist called him a "melter"... just pushing against something or someone ALL the time to try to find his body in space. If my kid were a Labrador or a Rottie we would call him a "lover".  The Sensory Integration therapy (OT) has provided us a language and strategies to help him meet his sensory needs.  Our goal from the outset was to provide him with "socially acceptable" (or more socially acceptable) ways to meet these innate needs.  The truth is that about every 6 to 8 weeks we see some new behavior manifest. Now we can see the patterns of how they relate to the seasons and growth spurts.  When he was little those behaviors were sometimes frightening because we didn't know how to help.  But our anxiety only added to his.  A rash would become weeping lesions.  Restarting sentences led to head banging.  Pacing led to slamming into walls.  And being a victim of bullying led to verbal aggression.  He developed a rare untreatable autoimmune disorder. Eventually, threats of suicide from a 6 year old showed that we were NOT supporting him in the ways he needed! 

We learned to opt out of the emergency mentality.  We took time to just slow down, really OBSERVE him.  We started back where we were when he was an infant - a really cool kid who did really cool stuff.  He surprised us.  He laughed, he played, and he was trying SO HARD to connect with us!!  When we came back to a place where he was just... himself... everything got OK.  In fact, it got awesome!  It was clear that he was working hard to meet our expectations of him as best he could.  It was clear that we could develop our own vocabulary for what he experienced, and it was clear that we needed to focus on strengths, not deficits.  Look, I am not perfect person either.  I have my own meltdowns and sensory overloads.  There are days and times I just don't cope (deflect to an obsession topic - like knitting). 

My Autistic son is HUMAN... JUST LIKE ME.  His experience is distinctly his own, but it is not broken or cursed!  There are no pieces missing... just ones he sees that we don't... yet.  Thank GOD he is not perfect, because then he'd be an angel and God would have to take him back!  I want to learn with and from the gift of this child's life.  It does not matter what label you, or the school system, or Autism Speaks puts on his differences;  he would have them anyway, and they would be exactly what he needs to learn in life.  HE IS A FULL HUMAN, living, everyday, the full spectrum of the human experience - he is learning to be the best him he can possibly be!  THAT is what Autism is...

Further on SPD and Swimming

Time to follow up on what I published earlier this year, to be specific about how I see SPD playing out in swim lessons.

Incremental Learning/ building physical tolerance

Much like Sensory Integration therapy (SI) - the student has to be exposed to the stimuli many many times over a long period in small steps - in other words: GO GENTLY.  With swimming in particular, parents become VERY invested in seeing success, because it is a safety issue.  There is a cultural perception that swim lessons will "drown-proof" a child - and that is simply NOT true.  It is VERY, VERY frustrating to watch a child be so afraid or reluctant that they do not perform the "assigned task", but the point is that their body HAS to teach them. There are 2 main factors in this dilema: parental expectations and the length of traditional classes.

Don't get me wrong - this is NOT a "preach at the parent" moment - this IS a learning moment.  Really ask yourself - WHY  did you enroll your child in the class?  What IS it that you expect your kid to get out of swim class?  Many parents are enrolling their kid in a swim lesson because this is one of the child's first experiences with "formalized schooling" - They expect the kid to be able to hear and perform the instructions of another adult and be in a group of peers.  Swim lessons can do that - but the adults around them have to remember that this experience is compounded by the novelty of being in the alien environment of water itself.  Maybe the parent's goal IS to teach or hone life-saving aquatic skills (make them better swimmers).  If that is the case, then watch - observe, and remember that teaching is most successful when it comes in digestible pieces.  What skills ARE your child lacking? Which do they already exhibit?  Do they have the motor control to actually do that movement?  The hardest part of swimming is that the body is performing several tasks simultaneously, often alternately - so it's like patting your head, rubbing your tummy, chewing gum, and keeping a rhythm with your toes and then switching every 7 seconds.  There is a LOT going on there! 

BE PATIENT.  

That is hard to do with your child under any circumstances, but especially when you are so concerned to see that progress that will make you feel confident about their safety.  Like the adage of special needs parents - celebrate the small successes.  Focus on just one skill at a time, submerging, flutter kicking, breast stroke pull.  Even at the competitive swimming level, this is what they are doing - concentrating on the minutia of a movement until it becomes MUSCLE MEMORY.

And that is where the length of the class is a problem.  Traditionally swim lessons are 8 1/2 hour sessions (that is what the Red Cross curriculum is set up for) - so 4 hours of instruction time.  Think carefully about that.  What skill did you learn in just 1/2 an hour?  Have you ever mastered a new skill in just 2 weeks?  Middle school classes are typically 45 - 55 minutes, and it takes kids 9 months to "master" a topic!  Having realistic expectations about what your child will take away from the class is VERY important, as well as understanding that it is just a starting point.  A 1/2 hour class is not really long enough to allow the kind of practice that builds muscle memory - it allows the kind of practice to explore.  And the hard truth is that while there are "correct" processes and movements to swimming, each and every body swims in a different fashion.  I can't tell you how many parents come to class concerned that their child can't float.  Well, if your kid is finishing a growth spurt and has no fat to float on, then you're right - that kid won't float - at least not flat.  The kid needs time to explore their own "center of bouyancy" - which is not the "center of gravity".  Your kid has been trying to coordinate their arms & legs to run and play for several years by the time you hit swim lessons - and now the water moves the center of their body!?! CRAZY!

Remember too, that "success" is about visualizing too.  It is known that athletes visualize their actions, and that it can greatly impact performance.  The truth is we do that for ALL activities.  In the special needs world (and experiential education) we call it "front loading" - letting people know what is expected of them before they engage in the activity.  "We are going to the grocery store - you are expected to touch the cart at all times. You will not be getting any candy or soda today."  "We are going to pass this hula hoop around this circle without letting go of each other's hands.  You will have to get your feet and legs through"  "You are going to chaperon this field trip.  Your role is to keep your student group together between formal instruction sessions." - It's about making expectations clear, about making sure that the person doing the thing can see themselves doing the thing before they actually do the thing.  As adults we use this skill all the time, because we have been taught it and had plenty of time to practice it.

Kids need that too.  They need to see the swim skill demonstrated, and then they need to practice it so that they can feel the movement (it is hard to see underwater, but it can be a useful tool to do so with goggles for strong visual learners).  Moreover, they need to think about doing it.  The biggest bursts of success I see are when the classes are a week apart.  The kid has had all week to talk about the movement, listen to parents encouraging the movement, interact with the movement in their head - and they demonstrate a better mastery of the skill a week later.  The extreme example is my own son.  For 2 years he would walk up the diving board - in a life jacket - look at the life guard and say loudly, "Don't worry! I am not jumping in! I am just looking!" - and he would.  For 2 long summers we watched him do this several times a week.  I REALLY wanted to throw him in, to just get him over it (and I did a couple times and would see regression - he wouldn't go on the board as often), but eventually I just left it alone (he was in a life jacket).

Finally one January (clearly NOT pool season), he says to us, "This is the summer I will jump off the diving board." - very matter of factly.  Ok, we'll see..., but we did talk about it all winter.  Sure enough, May came and the pool opened.  We went opening day, and he walked to the board several times, but not up it.  After 4 hours I finally prodded, "So, is this the summer you are going off the board?"  "Yes"  "Do you want to go now?" "Not yet" "Ok, how about at 3 o'clock?" "Ok".  Two minutes later: "Is it 3 o'clock yet?" "No, not yet" - two minutes later: "Is it 3 o'clock yet?" "No, not yet" - two minutes later:"Is it 3 o'clock yet?" "Yes [fine!], it is close enough".  He marched right up to the board, walked to the end and jumped off - no hesitation, no life jacket.  This example is pretty extreme, but if you just sit and watch kids at a pool, they do it all the time.  They see if they can submerge a little deeper, or jump in a little deeper, or even just run farther before they jump in (which is not a safe behavior, I have to add).  As I watch families visit all summer, I can see a kid move to a deeper section of the pool with each visit, pushing themselves to grow skills, to explore new movements, to go faster.  We often see it with the "jumping into chest deep water" activity.  A student starts at the chest deep depth, and will do it several times during class, and then after class work themselves down the wall to deeper water - often for over an hour.  If they "scare" (I like to say "surprise") themselves, they go shallower for a few minutes, but they always come back to conquer the goal they set for themselves. 

The best way to support your child's ability to swim is to come to the pool often so they can practice on their own terms. That kind of learning is self-teaching - the brain and body will remember it longer - but: 

IT TAKES TIME.  

Language

I have often said that the strength of SPD discussion to me is that it provides me a language to describe what I see.  Being able to verbalize your fears always makes them more conquerable.   It also allows us to be specific.  And the seeking/ avoiding aspect of SPD lets people make correlations between their actions (or the actions they observe in others).

VESTIBULAR: This is that sense of balance in the inner ear. One of the most mentioned concerns with teaching swimming (by concerned parents and in training tips) is reluctance to float.  When I see that behavior in toddlers I immediately ask if the child has reluctance to tilt their head back for hair washing too (a textbook example of a vestibular avoider).  How about swings?  Does that kid who is reluctant to float avoid swings too, or demonstrate a low tolerance for them?  Adults do that too - by avoiding roller coasters.  Or is your kid a vestibular seeker? Do they hang off the couch upside down often? (Yeah, I totally did that as a kid, and knew it made me "feel " better, but not why).  Are they having trouble floating because they are busy turning over/ feeling their body move?  Once we can identify associations outside the water, then we can "treat" them/ "practice" them outside the water.  My son definitely conquered being horizontal in the water (the major milestone of successful swimming) by conquering swings through the winter. And talking about what they are feeling, gives them more control over what they are feeling.  

I did an interesting experiment on my husband - who is amazingly physically awkward (visually so).  At 40 years old, he had never floated, so I asked him to lay in the water while I supported him.  He did (BIG trust moment), but the insight is not that grown-ups have sensory issues too - it's that he is old enough to describe to me what he felt.  After floating for no more than 2 minutes, he stood up and weaved on his feet for nearly 4 minutes.  He did say that propioceptive input (hugging and submerging to the shoulders) helped him "re-center" and be able to walk straight again.  While this example may seem extreme, consider that he has gotten though his whole life without ever having to deal with this sensation.  If your kid doesn't like laying in the water, or swings, or vestibular input, they may be having this extreme reaction and can't verbalize it to you!  Help them build that vocabulary.... "Hmm, does laying in the water make your head feel like it is spinning?"  "Are there circles inside your head?"  "Does the swing make you feel like it is hard to stand up?"  "Does it feel good to hang upside down?"  Use your instincts - think about what YOU experience, verbalize YOUR sensations, and give them room to disagree with you!  Their body is theirs, and maybe they feel something different, but by opening the discussion, you give them the room to label their sensations, compare them,  conquer them.

PROPIOCEPTION:  This is that idea that the joints register pressure in the nerves to define where they are in space.  The theory explains why kids trip over their own feet, or hit too hard, or don't like being hugged.  As adults, this often at the heart of a couple's cuddling debate.  In therapeutic use, we use it "center" the body, to calm the "hyperactivity".  It is the exact same "technology" that the "Thunder Shirts" for dogs uses - and that swaddling babies uses.  It comes into play with water because - water is heavy.  I have read in one occupational therapist's Facebook [Raising Sensory Smart Kids - a book too] that many propioceptive seekers submerge to feel the water "hugging" them.  I would imagine that propiocetive avoiders (I don't have one, so I have to extrapolate here) are bothered by the weight of the water on their body, much like a weighted blanket would feel like it entraps them.  Validating these sensations with vocabulary, with labeling them, creates a skill to build instead of a vague fear to avoid.  The body will still need to be dosed in small increments so as not to overwhelm, but the process (and oration of that process) of creating small goals and meeting them will empower the learner.  "Does the water feel like it is hugging you?"  "Can you feel your hand pushing the water against your legs?"  "Do you feel your feet coming out of the water when you kick?  Try keeping them in the water..."  "Let's try submerging just to our belly button... just to our elbows... just to our shoulders..." 

2 points/ asides about this: it is because the water is heavy enough to feel like a blanket that it is strong enough to hold you up when you float - it IS denser than air, and that density is what pushes the body.  I also noticed with my son (who is clearly a propioceptive seeker of incredibly awkward body movements) that his body moves more gracefully, more purposefully, with more coordination after we have spent weeks in the water.  We usually spend a full 6 - 8 hours at the pool several day a week during the summer, and he is by no means in it all day (like his body hits some kind of plateau, but he always comes back to it. As if his body is learning by the comparison?)  I would postulate that the extended opportunity for him to learn & practice movements, at his own pace, to control his environment and keep "pushing that envelope" ingrains that muscle memory piece.  Seekers are known to need more stimuli to register a sensation and the water gives a constant increased "pressure" on his limbs as he moves in it.  Our OT has also pointed out to us that he is much less "bouncy" during summer/ swim season - and we see the furniture bouncing and body slamming return when the pool closes.  Of course, the kid's body grows every winter and he "loses" his body and has to "redial" it in again every summer...  I urge you to look for/ observe patterns in your child.

TACTILE:  There are 2 aspects to this that need to be explored.  One is the sensation of water on the skin.  I kinda think that one might be linked to propioception - like the difference between being brushed up against and banged.  Water tends to be gentle - so maybe the movement of water on the skin really does "tickle" people?  I don't know that I have ever heard someone say that in those terms, but I think it is a strong possibility.  Again, incremental exposure is the best "treatment".  People learn to not be ticklish - or at least control their reaction.

The second has to do with water in the face.   I am not sure that "tactile" is the best category for this, but I am not sure where else to categorize it.  This is a complicated discussion.  It is absolutely normal to react with anxiety when the face is covered in water (like submerging the head) - I would argue that it is an instinctive life preserving reaction.  In fact, we take advantage of that when we teach the Mommy & Me swimming.  Infant's bodies automatically hold their breathe when their face is wet or blown into.  We reinforce that instinctive response by counting down to submersion and praising its accomplishment - moving the unconscious act into conscious control.  I think it is a similar thing as you get older - about controlling your body and environment, about creating consciousness of what the body does without our thought.  This is a pretty deep thing.... 

I have 2 insights, kinda techniques, that I have used to address this.  First: when I was very small and my grandfather taught me to swim, one of the few things I remember distinctly is when he talked to me about coming up out of the water - like when you are pulling up on the side.  I remember him directing us to look down as we came up - and he explained himself: the water can only flow down, so if you are looking down, then it cannot flow up to your mouth, nose, or eyes.  I have a vague memory of him saying it would get the water out of our eyes faster.  I have to say I have done this as long as I can remember, and that I remember thinking as an older child and as a competitor in high school that it gave me a sense of control when I was pushing my envelope (longer swims without breaths) - I knew I could get air.  In fact, this is really what breathing during the front crawl (freestyle) is all about - using your nose to create an air pocket for your mouth as you turn your head.  It's about controlling your body to control the water - knowing you are in charge, not a victim of the water.  This kinda leads to my second technique - the shower.  I often recommend to parents to "practice breathing techniques" in the shower.  While some people are rather defensive that their kids can take a shower, what I mean is that submersion of the face can happen in the shower.  The example I give about my own kids:  I was afraid they would squall during baptism, so I spent several weeks dousing them with water.  I started with sprinkling, but then I would pour a half a cup, and then a whole cup directly over the center of the head.  They instinctively held their breath, learned that it ended shortly, and actually started to look down to protect their face.  Anyone can practice this in the shower.  I find that I tend to spend most of the time in the shower with my face out of the water, but you can actually practice the whole looking down thing in the shower by putting your head squarely in the spray - gain control of what is happening/ start with the familiar and slowly add new sensations [EXACTLY what SI therapy is about].  Once you're OK with it, you can even play with/ adjust the angle of your face and test new sensations...  

Interestingly what most kids and adults I have worked with do orate is that they are uncomfortable with the sensation of "water in their eyes."  You can totally practice getting water in your eyes in the shower!  And the water in your shower does not have chlorine in it like pool water....  Though in all honesty, it is NOT the chlorine that makes your eyes burn - it is the pH of the water.  And the water from your shower will make your eyes burn 'cuz the pH is not balanced (in the middle of the spectrum)... if you can handle opening your eyes in the water in the shower you can totally handle it in a well maintained pool.  Even without the chemistry lesson, it's about controlling how your body reacts to stimuli.  If water in the eyes is the problem, then address it, in a place where you feel comfortable/ strong - in a manner that gives you a sense of control - appreciating each small success as you build it - and it will lead to you being confident that you can control your environment in general - and you will control your reactions.

And THAT is my point!  It is ALL about breaking down the steps and building up the experiences so that confidence is gained - because CONFIDENCE will create a safe swimmer - fear ALWAYS leads to sinking.  One of the primary safety rules the Red Cross teaches is:

Think, so you don't sink!

And the SPD conversations give us a new perspective to think from, because the answers do NOT always lie in the pool!

On SPD and Swimming

ok - so this is actually a short prelude - I think I need to collect my thoughts and do a several statements of the relationship between these 2 ideas. 

The gist is that they are RELATED.  Once again it seems like the ribbons of my life are woven in a solid image, creating a True Path of Insight instead of just fluttering around waiting to be picked up...

I have been instructing swimming for 3 years now (formally) and have an American Red Cross (ARC) Water Safety Instructor (WSI) certification.  All that has combined with my previous teaching experience (classroom as well as challenge course) and parenting experience to bring me to a place where I see the process of learning & teaching swimming in a vocabulary I am not hearing elsewhere.

There are certain behaviors that are common to children (and adults) who struggle to swim.  They have trouble tolerating certain sensations - like water in the eyes, or floating on their backs, or jumping in...  these behaviors are COMMON, expected even.  Most of the strategies that are suggested in WSI training include offering the students visuals/ descriptions of what their body should look like/ do.

But I think it is MORE than that.  Sensory Processing is about REGULATION - about incremental building of stimuli to create a habit of tolerance.  It takes a LONG time, and you have to teach your own body.  [It's really very Montessori in philosophy - the "teacher" is creating an environment where the student teaches themselves through experience.] Teaching swimming is EXACTLY that.  When you become a WSI they give you a Performance Standard by which to progress students through levels.  They make it clear that students will often "stall out" at a particular level and have to take it several times to "pass" it.  At first I thought "What a racket!", but then I realized I was buying into that private school mentality that if I pay for a product I expect to receive it.  [I have had that experience as a teacher: The parent has paid lots of good money for their child to have an exclusive education, how dare I send home a report card that does not indicate their achievement?]  

But it's really about that "Montessori" realization that the body and the mind must meet for us to observe "success" / mastery - and that happens at a different pace for EVERYONE.  

The Body an Mind must meet.... sounds like a "sensory processing" process to me.

Water/ swimming/ submersion is an "alien" environment - it creates sensations for ALL people that are "alien" to our daily living - in particular it significantly impacts the tactile, vestibular and propioceptive sensations and processing.  

The strength of SPD, for me, is that it provides me a language, a vocabulary with which to identify and then address challenges.  And I don't just mean that it allows me to identify what's "wrong with you"..., I mean that it allows me to explore my own experiences, compare them to others, see and label minute facets, and then verbalize that understanding - it allows me (the teacher) to identify with you (the learner) so that we can put a name to those unknowns that are the starting point for fear.  

And fear WILL kill you in the water.  If you cannot relax and trust the water to support you, you WILL sink.  It is ONLY when the body is relaxed that we can float.

And once we identify with each other, we can find common ground - I can tell you what strategies helped me, and we can observe together if those strategies help you, or if they helped someone else, or compare them to what your instincts are leading you to do, and the natural physics that drives the physical reality that is coming to the senses...  We can work incrementally to create a series of successes that help the learner gain confidence in their ability to conquer their body.

Let's just work on getting water in the eyes... let's work on just getting the feet off the ground... Let's work on just the kick rolling the hips...  let's work on cupping the hands so you feel the water pushing past your hips... Let's work on just getting water in the ears...

All these are SENSATIONS - so they MUST be about sensory processing.  Moreover - they are only achievable with body readiness/ developmental readiness.  A person has to be able to feel where their hand is in order to make it push the water (propioceptive) - they have to "find" themselves - and THEN they can build endurance, habit, skill....

We, the parents, the community, have a responsibility to create an environment where safe learning and exploration can take place.  I read recently that 92% of autism wandering deaths are drownings... we need to ACTIVELY take responsibility for teaching/ treating/ "therapizing" that skill - TO SAVE LIVES!  

And it doesn't just mean just in public!  

Once you have clearly identified sensory inputs that will support swimming skills - YOU CAN PRACTICE THEM IN THE BATH TUB!!!!!  

Just like Sensory Integration Therapy (SIT) - it needs to be incremental and consistent - happening ALL the time EVERYWHERE. 

And just like every other "therapy" or learning opportunity that we are striving to provide for our kids - it's not really about skill mastery, it's about self mastery - to make their personal universe bigger...

On Sensory Processing Differences

So, for those who do not know, there is an idea specifically addressing those "weird" behaviors that we see in Autism Spectrum Disorder (ASD) people - Sensory Processing Disorder (SPD).  Personally I think the "D" in both would be better filled with the word "difference" instead of "disorder", but I don't get to vote on what the American Medical Association Diagnostic Manual (AMA-DM) uses as vocabulary.  So the idea is that the senses of a person on the [autistic] spectrum just function totally differently - that what the body is telling the brain is not like what a "neuro-typical" person receives/ processes. 

There is some debate on the validity of this idea, and even more on whether a person has to be ASD to have SPD, or whether a person can be SPD without being ASD.   The occupational therapist (OT) at the public school we have been attending believes the whole SPD idea to be hogwash, and from what I am reading on other parent support sites, it seems that getting those "sensory needs" addressed and managed is a great hurdle to MANY parents.  For anyone who is remotely familiar with ASD kids (or SPD kids) none of this is earth shattering news, they are living with it.

For me, I have found that the SPD vocabulary is a GREAT tool for understanding and discussing and managing my Aspie's behaviors, and my own.  I tend to think that probably EVERYONE has a Sensory Processing Difference - after all you are a distinctly unique combination of your body & soul, so shouldn't you be totally and completely different that everyone else?  I am betting that the "laws of physics" for biology are not the same "laws of physics" for the soul/ spirit, so it's not hard to believe that we will see many different expressions of the combination of the two [genetics is all about how many different combinations come from two].  In the back of my heart, though, I still find the verbiage somewhat deflating.  It takes the amazing, miraculous being of "ME" and reduces it to scientific vocabulary that sees me as a balance (or mis-balance) of mechanical "input".

Further explanation:  SPD proposes the regular 5 senses (that Kindergarteners study), and adds two more: vestibular (a sense of balance, associated with the inner ear, and with sensations of weightlessness) and propioceptive (the sense of... motion? place?... the idea that the joints tell the brain where the body is - associated with coordination and motor control).  SPD proposes that a person is either over-sensitive or under-sensitive in each of these 7 sense "spectrums" - and that a person can be over in some and under in others. 

Let's look at taste - an overly sensitive taster would seek bland foods, would "feel" the heat of spice as "hotter" (crunch doesn't count here - that's propioception). So instead of my dad's love for Thai food being a personality trait, it is now defined as his under-sensitivity to taste - he needs "more" to even register the sensation. My diagnosed Aspie seeks strong foods - ate a packet of wasabi (hardly teared), loves seafood, curry and Latin foods.  My younger kid only wants rice - plain by itself, sometimes fried rice, and seeks candy.  So does this indicate that different spots of the tongue are operating differently?  One seeks salt, the other sweet?  I myself prefer bitter - dill pickles, cranberries, vinegar sauces, coffee, dark chocolate, but apparently my sweet doesn't work very well - all fruits and veggies taste the same to me... like fresh cut grass smells.  Do these differences in taste constitute a disorder? Or are these the natural differentiation of individuality?  Is it worth getting treated for veggies tasting bland to me?  There are those that might argue so, looking for a therapy to make "healthy" foods taste "better" – after all, we are holding McDonald's responsible for our food choices...

Let's look at vision - an overly sensitive visual receptor would seek milder colors, less pattern, less clutter (clearer visual distinction), maybe even less contrast.  Some would argue that the lack of clutter is an obsessive compulsive disorder (OCD) thing - like my grandmother who needs everything geometrically balanced in wall hangings, or my friend who needs the desk tools placed in a specific location. I for one have NO issue with clutter, and come from a long line of hoarders.  Got the plaque that says "the gift of disorganization is that you always make new discoveries".   The L.A. Times reported that one of the "hidden adults" with autism it found is a magician with his materials everywhere - his significant other said he "needed everything out where he could see it" - that describes me EXACTLY.  We got rid of all the chest-of-drawers in our house - clothes are stored on shelves, in cubbies or clear baskets.  Then there's the case of my other grandmother's house: every piece of furniture in a room is a different patterned fabric, with every one a different shade of her 3 base colors (red, green and blue).  Now it is not that she has incredibly bad or eclectic taste, it is that she is under-sensitive to visual input (I recognized this when she complemented the strongly contrasting oversize plaid pants that my son was wearing 3 times in one hour).  It really just proves that beauty IS in the eye of the beholder, and she saw that riot of color and pattern as comforting, pretty, attractive - like the flaming orange kitchen she had when my dad was little (neighbors called the fire department twice because of the glow in the basement window). 

My bet is that further definition/ research/ introspection of minutia will show how this is related to reading - like with dyslexia or photographic memory. I have worn reading glasses since high school because we figured out that I have a ghost double image of words, but I am still an avid reader. Some with ASD have found vision therapy very helpful. 

Let's look at touch - this is where we get into the "itchy tags" on clothes - the one that therapists treat often with "brushing techniques" - and it effects the whole body.  For my Aspie kid, we saw it when we put a jelly-consistency silly-putty in the hand - gagged IMMEDIATELY.  It was very odd.  My Apsie diagnosed kid does not like to wear clothes, we have finally convinced that one that clothes must be worn to exit the house or when people visit [other people are modest, and it needs to be respected]. When there are clothes: no jeans - too hard - everything is sweat pants.  The younger one is almost never naked - dresses head to toe as soon as out of the shower, have to fight to get "less dressed" in swim suits.  Touch is supposed to affect eating - like being able to force down super smooth yogurt, or not being able to swallow the powdery/ crumby crackers.  My younger one's speech impediment is defined as an over-sensitive gag-reflex - can't make the letter "G" sound, or a hard "K".  I've read more than one blog of an ASD adult describing how the sensations of different textures scream inside their heads. 

So now my fabric habit (and yes, it is a bad habit for me - I have bolts and bolts of fabric) can be reduced to a clinical sensation - no longer my hobby, my interest.  But I have better vocabulary for why I prefer long haired dogs, and flannel sheets.

Take a look at hearing - well, really I don't know what to say on that one. I like lots of different kids of music, because they illicit different reactions from me, and drown out the voices in my head - let me concentrate. (the ADHD tie in - needing lots of sensory input in order to make one come into focus by contrast).  I know that I heard more when I was a kid and can cognitively process more than one conversation at a time.  I am definitely an auditory learner, and my Aspie relates what was heard before what was seen or felt in a situation.  My youngest has been labeled with Auditory Processing Disorder - and I think it affects not only that child's speech but also the ability to carry a tune, and the level of sassiness we see in conversations.  It can affect social cues (hearing the "punch-line" or the "sarcasm").  Could it define a preference for loud or soft music? For a strong beat or a flowing melody? I don't know.  Some ASD/ SPD people have reported a sensitivity to high-pitched electronic whines - like florescent lights.

I'm not getting into smell too much. It is so strongly tied to taste (spices, etc.)  I will say that the place I wish I had known this SPD vocabulary was in potty training.  ASD/ SPD kids are notoriously hard to potty train.  This is explained by their "inability" to register sensations of full bladders or bowel pressure.  It also seems to take so long 'cuz this is where those "sensory seekers" like to play with poop.  My gross-threshold expanded EXPONENTIALLY as we potty trained my Aspie.  I read a tip about a year ago (too late for me) that letting them play in used coffee grounds keeps them out of their own crap - I WISH I HAD KNOWN. I hope that other parents take that one to the bank! - but it clearly implies that smell is a driving motivator in that behavior.

So how about vestibular sense?  Well, this is supposed to be what we see in that kid who loves to swing.  My Aspie is apparently vestibularly over-sensitive - saw it in how swings were conquered.  It took over a year. Every time we went to the park the child would spend hours walking around them, looking at them.  After 6 months + the child finally laid across it, and swung with feet on the ground. After several more months, the feet were lifted - just once.  Each time we went to the park after that, a couple more swings with feet up were added. Now we have reached sitting in the swing, but those feet drag every time they get close to the ground.  As an infant we saw it on the carousel - a TOTALLY freak-out experience for that infant (and the grandmother who insisted on taking him on it).  My younger - not so!  That one swings self right off the swing - often - hangs upside down on bed, prefers merry-go-rounds.  It's quite amusing to watch them side-by-side on swings at the park.  This is the sense that equestrian therapy is supposed to help so much.  The idea is that for those who are unable to walk "normally", the gait of a horse provides natural rhythm that the brain is unconsciously seeking, that makes the brain "re-coordinate" itself. 

As I watched a neighbor ride their horse once, I thought about how the vestibular sense was being engaged so continuously.  If some people are born seeking/ craving that kind of input, would that mean that they have a natural propensity for horse riding, or sea faring (rocking boat)?  Would we be able to see patterns of that in families that have those histories?  If this is a genetic coding thing, would "natural selection" strengthen these traits in, for instance, landed-gentry (moneyed enough to own horses) or maritime communities?  And what about that one kid in the sailing family how has uncontrollable sea-sickness? Or the "gentleman" who prefers to walk, or the "lady" who prefers to ride?  Are those SPD issues, or personality descriptors?

And propioception - THAT is a hard one to wrap your head around.  Basically we are saying that all klutzes lack propioception; they "lose" their bodies "in space" and just cannot make the body do what the head envisions.  One physical therapist (PT) told me once that my Aspie would just have been called "uncoordinated" in an earlier time.  This is a particular concern with parents, I think.  The playground picking-on often stems from being an un-talented athlete - the last kid picked, because they are not an asset to the team.  PT and OT are supposed to work together to improve this sense.  For many it is seen in writing - the hand just does not create legible words - like a doctor's signature.  There are many "academics" who have this issue, often unable to read even their own writing.  The OT's working with my Aspie say it effects how hard the pencil pushes, the amount of friction the implement has with the paper can overwhelm, the fingers and wrist cannot twist to create shapes.  The most common "accommodation" made in schools is to let ASD/ SPD kids type instead.  [Ummm, it's pretty much the same skills to me - but I am a "hunt-and-peck" typer 'cuz I can’t get the coordination down right - and a fast one too, though lots of mistakes.] 

Another place we see this is in hugging.  My Aspie is a propioceptive seeker - he is constantly leaning on things ["melting" is the term one OT used].  Swaddling was VERY important as an infant, sleeps under many quilts and heavy blankets, pushes heavy boxes around the library, constantly asking us to wrestle ("tickle-fight"), has even asked the sibling to sit upon self.  My mother even saw it as an infant, said my Aspie was "more cuddly" than most babies.  My younger kid - not so much.  Asks for hugs, but stops them quickly, wrestles/ tickles with us, but not for long.  This is supposed to be the sense that makes kids bang their heads, seek crunchy foods, play "too hard" or "too rough". 

I am thinking that it is what makes football players play football instead of the crazy fast ping-pong of Asia.  Is this the reason boxers box? They don't "feel" the hit?  Is it why my family is full of competitive shooters, because they "seek"/ enjoy the recoil from the gun?  Can propioceptive sensitivity explain why many couples have difficulty with the one who is a cuddle sleeper and the one who spends all night elbowing for more space?

So are the peculiarities that define "ME" just a list of symptoms from my senses?  It just makes me feel... cheap... to think that I am not a magical mix of what makes me feel happy or sad, but only a compilation of electric exchange between cells.  There is a GREAT deal of value, to me, in being able to use this vocabulary with myself and my family - to say that I am having a auditorily sensitive day and the screaming has to stop, or that when my Aspie is literally bouncing off the walls, we need to do a propioceptive activity like trampoline, or when the youngest swings for hours, it's because that one needs it, or when I need my husband to remember something, it has to be written down (visual). 

Of course, I could just keep doing what I am already doing - telling my kids that God creates each and every person different and special, because each has a job that only they are designed to do - and our job is to respect and honor those differences, in ourselves and each other, because God creates everyone and everything for His reasons, not ours.  Difference is divine.