Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Sunday, March 17, 2013

St Patty's Day...

On this day of O'Ness... we have celebrated Irish culture with a discussion about the Holy Trinity symbolized by the Shamrock, whether or not leprechauns will tickle to the death, Guinness Stew & Colcannon...

And some BIG insights of the "Gift of Gab".

We awoke to pinching and tickling as we decided who had green "on" (my kiddo wasn't letting me get away with green nail polish, but he was naked, so he was on the defense...)  Then we settled into Irish traditions like the shamrock (being the Holy Trinity) and the kissing of the Blarney Stone.  After pretending to be a leprechaun for a little bit, we moved on the to Gift of Gab!

We talked about how we (the family) have the Gift in different ways.  For some the Gift of Gab has to do with Woo (from the Strengths Psychology - the idea that everyone is a friend  like a politician or salesman has) while for other the Gift of Gab is about story telling and dramatic narrative, but it can also be just having lots of detail and information to share, saying things n a way that people can understand, "words they can hear" so to speak...

my Aspie wandered off for a second, and then came back and said

"I don't know why the children at school said 'alert' every time I sat down to eat"


Ah - this has been haunting him a lot these few months, trying to come to grips with the bullying just before we started homeschooling, but he has not been so clear in his expression  declaration of the events or his concerns, and he was not agitated, but thoughtful.    Just yesterday we had discussed the Native American story in which the the elder tells the young brave that there are 2 wolves in each of us, Love and Fear; the one you feed is the one that "wins".  He had tried to show me he was "feeding" his Fear Wolf by looking for things to break. Time to think carefully, Mom.

"Well, I think that some of them thought that it really was a joke.  A____ clearly did it as a joke, but X____ clearly did it to be mean.  You knew that.  That's why you hit X____."

"But I was the one who was mean! I hit X____!  I was supposed to tell a trusted friend!"  NOW he's agitated! the high pitched screech, the shaking...

"Yes, that was mean, but X____ was mean first, so we know you had a reason to be mad. 

And you could have used your gift of gab. You could have looked at X____ and said 'Don't say that to me!'  You could have said to X____ 'Please stop, it is NOT funny.'"

A HUGE, deep genuine smile beamed across his face, his eyes continued to look far away, his body got still, and he slowly, quietly said, "yeah...."

Then he moved in for a cuddle.

I think this indicates that he forgave himself, and I am sooooo thankful!

Then he said, "I could use my Gift of Gab to come up behind them ,and then"


I interrupted him, "God loves you just as much as he loves those other kids.  The Gift of Gab can also be called self advocacy.  You have the ability to tell them that they should be nice to you, to please stop, and to go tell an adult. The more you talk, use your gift of gab, the more you be a friend, the more they can see your Love Wolf, the less they can hurt you"

He just kept beaming that smile, and his body was stayed STILL, and he muttered "yeah"...

I watched that smile, and for the first time in 2 years, I started thinking, "he'll be OK to go back to school.  He will be able to tell them to treat him with respect and not feel forced to act out"


If only we kind find adults he can trust. He did NOT say that he should have told a "trusted adult"....  

We have told him before that part of the reason we homeschooled is because we don't feel like the adults at the school were doing their best job to protect any of the children from bullying, but he has carried guilt about how he was bad, and how he had hurt others...  

And he is right to feel bad, but only within the context of forgiveness.  

And it is the Gift of Gab, that thing that pushes us and allows us to communicate with others, that will help us build forgiveness...  we have been discussing all this in different terms for over a year, and only now seem to have hit on the vocabulary that enables forgiveness...

I will readily admit that a lack of verbal skills/ ability would be a significant "handicap" in using your Gift of Gab - but I have studied abroad (just can't meet the vocabulary), and struggled with strange cultures (learning about new families, moving across the country), and communication is NOT always about words.  (usually it's about food when words can't be found - wink wink)

Genuine, True Friendliness is clear across whatever barriers.  If that Woo is there, that drive to connect, that faith that there are no strangers, only friends not yet made - then connection will occur!  But you have to be OPEN to it - because the format can be surprising.  I think this is the essence of the "intuition", the "collective consciousness" that psychics are talking about... the unconditional love, the magic moments, new awareness that Autism brings...

Maybe the Gift of Gab isn't about words... maybe it's about self advocacy.  Maybe it's about acknowledging the magic/ divine in you as much as you do in others... maybe it is about finally being brave enough to love yourself as you love others, not just love your neighbors as yourselves... expecting miscommunication and misunderstanding is part of the process, but it seems like that faith in humanity is part of it too.  

I have worked from the time my children were infants to help them believe the world is their Friend, to automatically assume the best of people. Apparently It is working?

Thursday, March 7, 2013

Lost Him... again...

So we lost our son... for a little while... again...
NOT like "he was dead"!!!! Hopefully that won't happen [... again]!

No, I mean that we... misplaced... him... in a snow storm...

Here's the scoop:

Lots of media coverage, BIG storm coming, LOTS of snow.  Facebook posts by local friends are all talking about Al Roker sightings around town.  We are at the "epicenter"... awesome.

Snow starts late at night, wake up the next morning and it's still coming, easily have a foot...
Husband/ Daddy gamely goes outside to shovel out the heating unit, and even let me sleep in...
I wake to hear sister crying in frustration because she cannot find her rain boots... I am guessing she wants to go "help" Daddy, so I urge her to look harder...
Daddy shovels a place for the dog as well as the heater, and comes back in for a warm shower.  Daughter is putting on boots...
Power flickers...
"Quick!, everybody pee! Before we lose power!" [We are on a well]
I call Son...
no response...
Daddy has jumped in shower, daughter has peed...
"Where is Son?"...
Daughter: "Outside"
"WHAT!?" Daddy & I , simultaneously...
I rush to find boots, Daddy rushes to get out of shower, I put my head out the door and call name...
no response...
I get myself outside, I call his name again. I see tracks leading to Dog's Spot and to the truck.  What did Daddy need out of the truck?
The truck door opens...

Son is in truck! "WHAT ARE YOU DOING!?  Come in here!"
"In a minute.  I am looking for something"...
!?!?! within a minute there is an inch of snow piled IN my truck where he's left the door open!  AAGGG!!!
Sludge thru snow...
"What!?  What are you looking for? Why don't you come in?"
"I have lost my shoe"
!?!?! dude! THERE IS SNOW IN MY TRUCK!!!!
"Get on my shoulders. I am done"
I sludge back to the house in 14 inches of snow with 60 lb boy slipping off my back...

20 minutes later: "Here's my Star Wars Lego robot!"

24 hours later: Daddy found the shoe in the 20 inches of snow next to the truck...

Remember that commercial for plastics that said, "It will be a miracle is he lives til..."
Plastic is NOT gonna fix this, man...

The Sensory Experience of Water...


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.  As the parent of a child on the Autism Spectrum, I have been gifted the opportunity to learn about Sensory Processing Disorder (SPD).  The idea is that individuals on the spectrum actually process the information from their senses in an extreme fashion – they either feel too much (avoid stimuli) or too little (seek stimuli) from every sensory input.  We seek treatment for our children with Sensory Integration Therapy (SI therapy) which is about incremental building of stimuli to create a habit of tolerance.  (We help them get “used” to the world around them VERY S-L-O-W-L-Y).  It's really very Montessori in philosophy - the "teacher" is creating an environment where the student teaches themselves through experience.  The learner has to conquer their own body…

Teaching swimming is EXACTLY that.  When you become a WSI they give you Performance Standards by which the instructor measures progress through levels.  The literature makes 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 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 and Mind must meet.... sounds like "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.

Here are some of the ways my experience/ insights from autism shape my swim teaching:

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.

Adults around the students have to remember that this learning 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!

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.  This theory explains why kids trip over their own feet, or hit too hard, or don't like being hugged.  As adults, this is often at the heart of a couple's cuddling debate.  In therapeutic use, we use it to "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..." 

TACTILE:  There are 2 aspects to this that need to be explored.  One is the sensation of water on the skin.  I kind of 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 breath 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.... 

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! 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 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...  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.  Two of the primary safety rules the Red Cross teaches are:

Think, so you don't sink!

Never swim alone.

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

Friday, March 1, 2013

On the Power of Apology...

This is going to be VERY long and detailed, because I have no other way to say to it.  My coping mechanism is finding context, so I build it...

A week or so ago, a page I follow on FB that is run by an autistic adult [a population who has been telling parents to start "passing the mike" instead of misrepresenting them] posted a picture/ explanation of meltdowns.  As I understand it, the author's point is that she seldom addresses meltdowns because they can be avoided (for the most part) with appropriate thoughtfulness ahead of time (accomodations, self-advocacy).  I TOTALLY agree on that point.  Ultimately we all face the task of helping the people around us perceive our "rose" as worth our "thorns" - of making people comfortable with our weirdness because we can show them our gifts.  My life has brought me to places that labeled my strengths, to people who valued my abilities, to conditions that enabled me to work well and synthesize my experiences.  I find that I am less defensive about my "thorns" because I can help others "smell my roses".  The language of "sensory processing" has been my most effective tool - allowing me to legitimate my needs and differences - as well as those of the people around me.  It has enabled me to label and use those strategies that "make it not personal"...

I believe that was the point the author was trying to make - that lashing out/ the melt down is NOT personal.

BUT - does that absolve the person having the meltdown of responsibility for their actions?

The advice (as I read it) was to ignore them, to completely disregard and dismiss them.  This is, ultimately, the same advice given to parents by all elders - ignore the behavior so that we only reinforce "good" behaviors, the ones you want the child to practice.  If you only offer positive reinforcement (NOT negative) then the child is more likely to demonstrate the behaviors you wanted in the first place.  Ultimately this is the philosophy behind dog training, and ABA (as I understand it). It IS often an effective means of dealing with a behavior.  But there are many who find that a little bit of negative reinforcement balances the positivity, and drives points home.  I have often pointed out that "a person only sits on a cactus ONCE".  There is brain-based research cited in the mediation workshops I have been taking about exactly that phenomena - that our brains are "wired" to learn faster and more permanently from fear.  But history also proves that fear is a weak motivator in the long-term...  I am as much about building human dignity as the next guy - want to build MY dignity, so I want to build yours too - but my teaching experience has led me to find that there is an appropriate place and use of discipline and negative reinforcement.

So - the meltdown.  The argument (as I understand it) is that the meltdown is uncontrollable, un-stop-able, and as such, the person melting down should not be held accountable for the meltdown.  Like a seizure?  


So here what I typed in response to being told to "ignore it"  [as I have been told to do for my husband, my grandmother, other members of the family - since I can remember] :
I think this conversation has hit on the crux of the issue... I TOTALLY understand the desire/ need to say " mean things", to lash out verbally, even physically... I mean I have done it myself my whole life, but it is NOT socially acceptable to scream insults. The school does NOT forget, and basically builds a criminal record for the child... seen it happen time after time, and the child becomes the " usual suspect", and their self esteem is DESTROYED because they are the constant "bad guy"... and as for an adult... my husband CLEARLY engages in this cycle, and the implied threats at minimum leave me feeling completely without value....I have been told by close and outside sources they this is verbal abuse... it is NOT ok. I too dread the thought that my son will hurt another woman like I have been hurt... I tell my son (my whole family)- "you can be angry, but you CAN'T be mean!". NO ONE deserves to have insults hurled at them, and the reality is that the insult hurling makes people afraid. While I TOTALLY understand the need to manage the meltdown, I find it also imperative to decrease the number- to channel the energy into a place that is NOT threatening to others. I understand that advocacy can help to decrease the trigger- and the world is responsible for respecting and meeting those needs, but the autistic person is responsible for not insulting me, or anyone else. I know from experience that holding in those insults leads directly to self injury, but that's the point. The rules of freedom are that you are allowed to abuse yourself, NOT others.  PLEASE, do not misunderstand me. I TOTALLY believe that behavior = communication, and that the only answers and strategies lie in looking for context in the environment- self knowledge and self advocacy. 

 At the very least, I think demanding a sincere apology is reasonable... not because the autistic person doesn't have a right to melt down, but because I have the right to KNOW they "didn't mean it" - if I have the responsibility of putting up with the verbal abuse, they have the responsibility of apologizing, right? I mean is the act of apologizing "punishment"? There is still an underlying need to change the behavior/ re direct it, right?


I too RAGE against the universe.  I was OFTEN berated and disciplined as a child for "being willful", for yelling and screaming, for using the strength of my limbs to try to communicate the level of distress my words could not.  I broke doors, punched walls, lashed insults, tried to find the most hurtful thing I could think of to get people to just leave me the hell alone, I was... desperately unpleasant....  Certainly not all the time, and certainly my parents love me none-the-less, but there have been many who have crossed my path to point out that I lash out, that I am immensely hurtful with my language, tone and actions, and that I am just too excitable/ mean/ single-minded.  I have often said that my son displays behaviors seen in MANY other members of my family; he is not out of context... in fact, he is well within it.  

I certainly was NOT treated like these outbursts were "unconscious" like seizures... I was held responsible for the hurt I caused, and expected to not only remedy that hurt but to improve my behavior.  Did I feel like I could control it?  No.  But whether I felt like I could control it or not was not a requirement for fixing a problem (hurt) my behavior created (or compounded).  I was taught/ forced to apologize for my outbursts.  I was expected to tell the people I had said mean things about that I was sorry.  I learned to say sorry A LOT.  And I was berated for saying that too - told that I clearly didn't mean it since I didn't suddenly change my behavior.  As I moved into adulthood, I was told to quit apologizing for myself, but I just couldn't.  I kept lashing out and being hurtful, doing things that I didn't mean to, saying things I shouldn't have, surpassing my threshold and being passionately loud in my protest.  The screaming until I lost my voice transitioned into tears.  I spent many, many nights through high school just crying on my porch.

This "lashing out" and being insanely hurtful is not singular to me.  My husband has also done it.  I have been married 15 years, and have known him a  total of 20.  We had MANY, MANY episodes in which his frustration threshold was surpassed... If the freeway traffic was bad, I got a tongue-lashing.  If I forgot an item, especially if it resulted in embarrassment, he made me feel very, very tiny; but I somehow felt that he didn't mean it.  I spent many years telling myself that I should not sound like an abused person.  I cried and prayed, but I also recognized a piece of myself in him - a thing that was so very like me, that was not named, but so clearly "there".  My family had reservations about our relationship, but I was determined (obsessed?) - my decision made, my commitment final.  And I sought strategies.  I learned that when a decision had to be made (whether it was to go to a restaurant or buy a car) I needed to spend as much time as possible preparing him for the choice.  It wasn't even as if I had to talk him into what I wanted, it was that I just had to help him be ready to even make a choice.  The story of our engagement is indicative:  2 years from promise ring to engagement ring.  6+ months from "will you marry me?" to a ring on my hand.  NOTHING happened fast, and there was always MUCH negotiating, processing.  His coping mechanism is not about widening, his is about narrowing.  A valid mechanism, but not one I understood.  And he learned that mechanism from his family too...


What I heard from his family is exactly what I heard in mine - "consider the source and ignore" - he/she can't help him/herself to say hurtful things, it is just "how he/she responds to stress", so just pretend you didn't hear them.  Just don't take it personally when you are called an idiot because of frustration with an inanimate object, or circumstances beyond your control...


IS the person having the meltdown absolved of responsibility for their actions?

This question of violent language and action is mentioned in several other responses on that FB post - by many others besides myself.  We, parents of autistic kids, have been told over and over that it is part and parcel of the condition, that we should just "suck it up" and put our child's needs before EVERYTHING else - even public safety (or the perception of safety).  One mother outlined a situation EXACTLY like mine, where her son yelled through the school halls that he hates people and will kill them.  I don't feel like those threats define his personality!  While these threats are easy to "dismiss" in a 5 year old, the school system is, none-the-less, required to document these incidents and builds a "history".  We felt our only option to protect him was to remove him so they don't have the opportunity to build that history!  They are clearly not providing the supports he needs if it has gotten to this meltdown stage - but once he gets there - HOW DO WE FIX THIS?!?!?!  Ignoring it is NOT a realistic/ viable option!  How do we follow up?

Here was the response, to my specific comment:

you are making the meltdown about you. That is never okay. If you are sincere that you have empathy for the person having the meltdown than that sincere can translate to you being able to drop it just as easy as you asking for a sincere apology. You (and all you guys) should spend just a few hours over the next weeks reading how it feels from an autistic perspective after a meltdown. We all feel like shit really badly. We do not have ability to express and you talking about it and especially talking about as if it is about you, will invalidate our emotions and needs at best and destroy us (our self esteem) at worst. Over time (as your child grows) you will be able to do more and more talking about this. Most of us actually largely outgrow meltdowns.


I admit that my experience colors my perception of this response. 
First of all, I am hearing that I a need to prove my "empathy", that I need to prove that I am autistic "enough" to "get it".  In fact, the first draft of this included lots more about my behaviors to prove that I really do understand what it means to have a meltdown, but I have removed them to protect my loved ones from the embarrassment of analyzing my relationships with them publicly.  It has taken YEARS for me to understand what information would embarrass others, and I am using that insight... I do not wish to hurt them further.  I am VERY peeved by the open insinuation that I just have not tried hard enough to "see it from an autistic perspective".  I certainly will NEVER see it from your perspective, I am not you - but you're not me either - so don't assume that I "don't get it"...
Secondly, I feel like I have to prove that I understand the crappiness felt by the person in the aftermath.  Again - My first draft included a description of the guilt I have carried for YEARS, about my destroyed self esteem, about my suicide attempts, about the self injury - but social decorum says that is my baggage, not for public consumption - don't assume that I don't understand...
Thirdly, I can tell you that NOT all adults "outgrow" meltdowns - my husband sure didn't!  I feel like I have been able to redirect, but ONLY through open exploration of the before, during and after - only by seeking the widest context for the meltdowns and accusations and threats made to me by ALL the family who have done it as well as those made by me.  It has taken years of reflection and empathy about the relationships I have built and how I have maintained them, both with specific people who I feel hurt by as well as my general patterns of behavior.  IGNORING it did NOT solve the problem...

And FOR ME an APOLOGY is an important part of the process.  

First of all, it reassures both me and the receiving party that I really DIDN'T mean it, that it was an uncontrolled outburst - that neither one of us has to buy that hype.
Secondly, it protects me.  It is no secret that cops and judges will reduce consequences for truly repentant perpetrators.  We do it to each other too.   By offering the immediate apology, as well as the one days later when I've thought about it, I protect myself from the worst of the very real consequences of violence I incited (no matter how justified).
Thirdly, it DOES help rebuild my self esteem.  Once I can clearly identify how I hurt someone and I act to rectify that hurt, I can respect myself again.  I can forgive myself more readily because I have acknowledged their feelings too, and made them and myself equally important emotionally.  I am effectively communicating how crappy I feel about it with out the self injury.
Fourthly, it is a tactic that is widely socially acceptable and understood (at least in my context of a Judeo-Christian West - but I think it is more universal than that, I just don't have the personal experience to vouch for it).  It is a mechanism that crosses that divide of assumption - that place where I am, or am not, autistic enough to create a sense of relatedness, a sense of being understood.  

Regardless of whether the person "means" they are "sorry", it is an important social construct - like being sorry for stepping on toes in a crowd, or bowling someone over on the street.  An apology opens the door for that honest/ frank conversation about what the "real" problem was (the need that should have been met in the first place).  That opening door will lead to healing.  And I am not talking about the "you are so weird you need to be cured" healing, I am talking about the ability to forgive one's self, the place where you really can hear/ feel what the other person felt, the reflection that enables self advocacy because you honestly know how to "meet in the middle", that place where you get frustrated enough with yourself that you create change, the ability to grow - the healing that gives you permission to be patient with yourself.

I stay with my husband because he has learned to say, and mean, that he is sorry - to show me that he finds my "roses" well worth my "thorns" and that he really is trying to respect me, not just use me as his overload dumping ground.  I want my kids to develop that ability too - to be able to use the language/ vocabulary that connects them to forgiveness (by self & others).  Do I think my 8 year old really "means" he is sorry?  Yes - I KNOW he is, because we have been dealing with the aftermath of his guilt for over a year now (regarding his violent outbursts).  But how would he be able to even broach that guilt if I he didn't know to say he was sorry?  I would HATE for him to think he had to bear that hurt alone...