Let’s Get Real

I need 17 minutes of your time to ask a very important question. Feel free to post comments. Be nice. Mean comments or blame shifting posts will not be approved.

Special thanks to my friends for their support, to Miss Representation for the courage and support system to talk openly about these issues, and to all my fans and supporters for your honesty.

 

 

Stones

Stones

IMG_1298When I speak in pubic about autism, the question that continuously comes up, in many different phrases is “does my child with autism love me?”  It’s a very difficult question for me to answer, because it saddens to me to think that parents feel unloved by their autistic children.  It saddens me more to think that a child must continuously prove their love to a parent through socially acceptable gestures, and that those gestures are confined to the few our society defines.

A hug, a kiss, a smile, a gentle touch, or the words “I love you,”  and perhaps to a few, non-verbal hints given with looks or presence.  Does love, or compassion, have to be delivered in a pre-defined box – I have a heart shaped box filled with candy, therefore I love you?  If I think of you, is that not enough?  What is enough?  What happens when love is shown in such new and unexpected ways?

Perhaps I am asking age old questions that persist even outside of the autism world.  These may be questions no one knows the answers to as they struggle to exchange recognition.  Yet, when put into the autism world, they are burdened with a new layer of strife between parent and child, adding the questions “Does my autistic child love me, or do others in my life just pretend to love me?”  Nothing can rattle a cage more than uncertainty.

I do not possess the wisdom to answer all these questions, but I can tell you a story.  A story of a piece of me so close to my heart, that I have never spoken of it.  Despite the intense vulnerability exposed by my revelation, I hope it gives all of you some solace and understanding.

 

Struggling with Love

As a young child I was clingy with some, yet avoided contact with others.  Contact from others was welcome on some days, and forbidden on different days.  As I got older, this attitude seemed to become more complicated, and I grew distant from those I had allowed contact with me in my past.  I understood hugging for comfort, but not for social expression, like when people hug to say hello or thank you.  I wanted to connect, but only on my terms.  I needed to understand why I was being touched and hold a reciprocal feeling.

As I grew older, I realized others wanted hugs too, but I couldn’t for the life of me read when.  One afternoon, while sitting with a friend who was recanting pain he was feeling with someone at school, I began to feel a vibration inside me.  I recognized he was in pain and needed comfort, but as his need grew, so did that vibration inside me.  By the time he was nearly to tears, I could no longer move.  No matter how much my understanding of his needs became clear, the vibration inside me would not let me comfort him with contact.  To this day, I do not think I have ever hugged him at a time of need.  I just stand there like a tree.

What was worse is my words get all jumbled up.  I struggle to find comfort words, so I spit out “I’m sorry” and then immediately go to work trying to dish out advice that could make his pain go away.  So why can I give words of advice and not words of comfort?  Easy, words of advice come from my highly accessible logical process, while emotional words come from my nearly inaccessible emotional process.

 

A Movie had the Answer

As time went on, and my friends had more problems they needed to unload, I became filled with these intense vibrations.  The vibrations even obstructed my own feelings to the point I had no idea what to do.  I would get sick to my stomach, giving me sensations much like ulcers.  No matter what I tried to do for my friends, I only dished out the advice.  Granted, the advice worked for most of them and they returned to get the advice, but it came at a price.  I became the friend they vented to but rarely the friend they invited to partake in activities that involved emotional exchanges – happy or sad.

Frustrated and wanting to show my emotion on the outside, I turned to my rock collection.  Yes, I said rock collection.  In the movie With Honors (a 1990’s movie with Joe Pesci and Brendan Fraser that I love), the character Simon Wilder collects stones as memories.  When he wanted to revisit the memory, he rubbed the stone to take himself back.  I was fascinated by this idea.

I pulled out my rock collection, and mentally labeled each one of them as a friend I was worried about.  When I was overwhelmed with this worry, I would pull out the stones and look at them, rub them, or hold them.  As my friends increased, and the number of their woes, I assigned little stones to the big people stones, and ended up with stone families.

My love for my friends and family didn’t come out the way people are accustomed to physically expressing their compassion, but I still cared.  Through my stones, I touched them with my thoughts, and cradled them in my hands.  For me, compassion is such a heavy emotion to bear, that I cannot move when directly facing it.  It was the stones that allowed me to be more for my friends, even if they never saw it.  I didn’t need credit, nor did I need my compassion witnessed by the recipient for approval.  I just needed a place to put it.

The picture above is of all my stones, hidden among the decor in my house.  As people pass out of my life, by death or just simply because life takes them another way, my worry subsides and they are transferred from the stone to my memory.  Their stone is passed on to another that enters my life.  In the special cases where the parting of a friend or family member leaves a hole inside me, I take their rock to a place I want to leave them, and I part with it forever.

Maybe stones are not hugs, or kisses, or facial expressions of sympathy, but they are symbols of my compassion.  Compassion that is deeply placed within me and far too delicate to expose.  Perhaps your autistic child, or friend, or relative, cannot show you compassion in the way you wish.  Though I ask you to believe me when I tell you that compassion is indeed there, waiting to be accepted no matter how it may be expressed.

The Perfect Life

The Perfect Life

Often I have been asked, by conference attendees who come to hear me speak, what I want out of life.  People are curious if my future includes people, independence, and decadence, or a scary isolated existence.  Not that there is anything wrong with living alone, but I do believe most people are shocked when I say “I prefer to live with someone.”

Money continues to be a large reason why I still am not where I want to be, only because we live in a society where access to money is necessary to live.  I’ve tried not to dwell on that too much, and instead try to enjoy each dollar to its furthest reach.  I don’t need millions, I just need enough.  Still, I think there is no harm in dreaming.  It helps us set goals, and is generated from that inner desire to see the word for all its good rather than the bad.  As I have said before, dreaming is the conceptual art of the inner self.

Assuming money is no object, and my life work blossomed just as I had hoped, then what is the perfect life for me?

I love the ocean.  I would want to be as close to the ocean as I could get, ideally in California, though any warm climate ocean town would be acceptable.  The beach at my back door, or at least in walking distance so I could view the waves anytime I needed to be calm.  My plot of land would be the smallest I could possibly have that would allow for my home to fit snugly.  My home would be a Frank Lloyd Wright Usonian style home, possibly like the Jacob’s house or the Goetsch-Winckler Usonian house.  It would have to have three bedrooms, even after my kids move on, because I would want my children to always have a room to stay in anytime they wish to come home.  Being environmentally conscious, I would love to fit the home with solar panels, and use led lighting. The wonderful thing about FLW homes is all the natural light.  My studio would be in home, where I could record, write, and create on my own.

Image

I’d love to own a Jeep, though I’d love to convert it to a no emission vehicle.  Hopefully, my home would be located in a place where bicycle, walking, or public transit would be sufficient.  I would spend time in town people watching, meeting locals, and learning about the world in which we live.  I would be the owner of an arts school that uses a teaching approach comprised of unconditional love, open to people of all learning types, and offered the most open scholarship program in the US, making sure that even the poorest of students can learn to play an instrument.

Given that my dream means that my financial needs are covered, I would donate most of my free time to helping public and private schools create disability friendly schools with integrated classrooms.  I want the next generation to grow up believing they fit into this world just as much as anyone else.

My perfect life would also include a not-so-perfect someone to live and to share the beauty of life with.  He wouldn’t need to share my interests or be anything like me, just simply be my counterpoint.  You see, to me, love is not like harmony, but really is more like counterpoint.  In music, a harmony supports the melody but is usually secondary to it.  Counterpoint is when two equal melodies are played together to create a complex and intricate sound.  They sound good together, oscillating between supporting the other melody and leading it.  Sometimes the two melodies even argue, but they always resolve in the end.  To me, counterpoint is love.

My perfect life has no specific goals or ambitions for my children.  I would simply just support what ever goals and ambitions they have for themselves, even if I struggled to see it clearly.  Just because we are forever tied together by DNA and by unconditional love, doesn’t mean I have any right or entitlement to insert myself into my children’s picture of their own future.  I must be invited by my children, and continue to love them even if I am not invited.

Finally, my perfect life would leave behind a story that could inspire others, even if it is just one other.  Pain sometimes needs to be shared, so others do not feel alone in theirs.  Yet, beyond that we should freely give away parts of our triumph, not to our own detriment, but in healthy amounts so as to show others that it does in fact get better.  If a spoonful of sugar helps the medicine go down, then be the spoonful of sugar.

There is not much more to a perfect life for me.  Seeing new places in the world is always welcome, and I do hope to travel as a speaker to places outside my home country.  It really is just that calm stability that comes with accomplishment that I seek.

Don’t Be Afraid to Love Me

Don’t Be Afraid to Love Me

ImageDon’t be afraid to love me, I am not so weak and fragile,
There is no need for pity, or to feel you are using me.
I’m not the weak, the poor, or the broken in need of your protection,
Despite the words scribes use in books, your love cannot exploit me.

 

Others were afraid to truly love, they merely played the game,
Pieces of me fell to the floor, kicked briskly by their pride.
The pain I felt they blamed on me, but really it was just a veil,
Made of their fragility, and woven in their jail.
Just because I have a name for what at birth I am,
They cannot stand among the blameless for choices they have made.

Don’t be afraid to love me, to break yourself free of wonting,
Run from your pretend little universe, your propagated image of me.
Inside us all are meandering songs, we crafted in our youth,
The days before accepted customs, subdued our imaginary friends.

The world unbridled invades our hearts, painting their decrees on walls,
Do not let them fool you for they are vandals masked as scholars;
Mocking dreams you once cherished, like pictures sold with frames.
Exchanging your wonder for specters, for them it’s just a game.

Punch out the mirrors reflecting the norm, listen harder to my silence,
The loudest words I’ll ever sing, are hiding underneath.
Start to dance unchained from the ordinary, and I will meet you there,
And maybe for the very first time, you’ll awake to ecstasy.

Don’t be afraid to love me.

Happy New Year!

Snowflakes 2014

IMG_0942

All that could have gone wrong with this film, did. My mic stopped working, forcing me to replace the violin with a midi instrument on the soundtrack. Then, my camera failed, so I had to film the entire thing with my iPhone. Finally, my aging laptop caused iMovie to crash 16 times, and made the exporting take 2 hours. I hope to afford new equipment this year.

Nevertheless, here is my latest message.

Happy New Year!

 

Holiday Donating in a Way that REALLY Helps

IMG_0893Many of you know that I favor donating to small, local organizations that do hands on good with their funds.  Though I do not have an exhaustive list of all the great organizations out there, I thought I would share a few of my personal favorites.  These are organizations where I have met the owners and personally witnessed their generosity in action.  They are in no particular order.

Shenanigans Improv Group – A group that uses improv to help children and teens with autism learn social skills.  http://www.shenanigansimprov.com

Surfers Healing – A group that uses surfing to bring peace, happiness, and bonding to individuals with autism.  http://www.surfershealing.org

SPECTRUM Autism Support Group – A great organization that connects people and resources, and provides wonderful support.  http://www.atl-spectrum.com/donatetospectrum.html

Agnes Scott College – My college and an autism friendly college.  You couldn’t ask for a better college experience.  I would love to see someone set up a scholarship at this school for autistic students.  http://www.agnesscott.edu

Marino Campus – The Dan Marino Foundation is working on an excellent project to help adults with disability receive a post-secondary education for work.  http://marinocampus.org

One of my favorite ways to give is by giving grocery store gift cards to local families that are in need.  It is a powerful gift.  Families can use the card to purchase food they will actually enjoy eating and need.  This frees up their usual grocery budget for buying gifts and allows them to have the freedom and pride of doing their own shopping.  All the major grocery stores have these gift cards.  My favorite is Publix: http://www.publix.com

Keep checking back.  I will add a more as I learn about them.

Laura

A Monday, Changes – An excerpt from my next book “3 Pairs of Shoes”

First, the three shoes

Red shoes – the teacher.  Red Shoes are slick, and shiny, with slim, wax covered laces.  Her red shoes make a sharp heel sound when she walks down the hallways, followed by a clicking noise, as the tips of the laces tap the sides of her shoes.  When she walks, she means business.  She has much compassion for her students, but she must spread her compassion around to all her students equally.  Close to her students for only one year of their life, she must lead with love, but then let them go as she finds energy to usher in the next group.  She has done this for 20 years now.

Blue shoes – the parent.  Blue Shoes are well worn, way past their prime, and full of deep scratches.  Not having time for lacing, these shoes are open in the back, so she can slide her feet into them at a moments notice.  She loves both her kids equally, but sometimes one takes up more energy than the other, simply because one of her children walks the world in disability shoes.  Her energy is focused on both the short term school year, and the life long projection.  Everything falls down to her, eventually.

Black Shoes – the student with autism.  They are lace-ups with thick gum soles.  They are spotless, and laced neatly, since Black Shoes cannot stand for her shoes to get dirty.  Black Shoes is silent on the outside, but filled with poetry on the inside.  Her shoes may carry her to the places she visits, but her typing fingers take her far beyond the confines of the moment.  She just wants to be happy, healthy, and heard.

A Monday, Changes

Red Shoes

Today, Black Shoes was good in class.  She didn’t have her homework done, again, and said she forgot.  The school has provided each student with an agenda for writing down assignments, and I know I keep my webpage updated.  I simply do not understand why her mother cannot follow up at home.  I never see her mother at school and only met her during registration day.  She has failed to attend other school events where she might see how I do things at school.  I really want Black Shoes to succeed, and I do care for her, but I have 90 other kids I have to pay attention to as well.  Black Shoes does get some help from a special helper, but I think she is capable of much more if she would just focus more.

Today, her mother emailed me saying Black Shoes was having a hard time at school.  Apparently, mom is seeing all kinds of worrisome behavior at home.  We haven’t seen Black Shoes act out or show us any reason for concern.  Maybe mom is just overwhelmed.  All I know is Black Shoes could be doing better.  I am doing all I can.

Blue Shoes

This morning marks the 12th night in a row that Black Shoes screamed in her sleep.  The melatonin is not working.  I have also lost sleep, just making sure she is in bed and staying in bed.  Changes at school have her stressed.  The changes, overall, seem minor, but she just cannot grasp what is happening.  I have tried talking with her, but she just cannot give me any ideas on how to help her.  I have tried contacting the school, but they say she acts fine at school.  It makes me so angry to see a kid doing well, making all A’s, and then suddenly slip into depression and not turning in homework.  I’ve tried getting the teacher to sign the agenda, so I have an idea of what homework she has, and so I can help her, but the agenda is most often empty.  It’s in the IEP, but that seems to make no difference.  Often times the online posting of assignments it posted too late, or not specific enough for me to know what is happening.  Did Black Shoes do her work at school? Does she need her text book?  I check online every night, but I am still finding out weeks later that she has zeros.

On top of changes at school, Black Shoes has a project that is due.  She struggles so much with long term projects because of her troubles with executive functioning.  Despite my work schedule, I have had to find time to do a project with her too.  Why can’t these projects be made to only require of her what she can do alone?  Why can’t she get help at school from special education teachers?  I can’t remember the last time I could just sit with Black Shoes and play a game, or take her out for fun, we know how much I am told by professionals that family bonding time is important.  We are always working, when can we bond?  If things don’t get done, I am the one who is blamed, and so is Black Shoes.  I tried to attend some school functions, but my work schedule clashed with the open house the school had a few weeks ago.  Since I am paid by the hour, missing work means less pay.  Her needs are too expensive for me to not work.

I have tried communicating with leaders and teachers at school.  Some of the teachers respond, and I am grateful for that.  But I can’t write emails asking questions I don’t know to ask.  I can see Black Shoes needs help, but I have no idea what is wrong.  The meltdowns this week are many and I am simply exhausted.  I have another kid that needs my attention too.  But all I hear is, “You should have thought about that before having children.”  I didn’t plan for autism, no one does.  I am doing all I can.

Black Shoes

My stomach hurts again today.  I can’t eat anything but  a few bites of pizza pockets.  Sometimes I can eat my sandwich at lunch.  I do not know why I feel bad.  I like my teachers, but I do not understand what they want of me.  I am quiet in class, even when I feel like screaming, because when I screamed before, I got in trouble and had my favorite free time taken away from me.  I want to ask for help, but I do not know how, or what I really need help with.  I understand everything they teach me, I just can’t always prove it.  So, I get distracted, and I forget what the homework is.  I want to write it down, but I can’t write fast enough when the teacher is speaking.  I am not allowed to have my iPod at school to type my assignments on my calendar.  I am told I have something called an IEP that helps me.  No one asked me to be a part of the conversation.  I may not know what to ask for, but maybe if I hear what the teachers want, I can try to talk to them.  I want to be good at school.

My helper comes in to help me, and I think she is nice, but I am feeling too much pressure.  My brain doesn’t want to work at the speed everyone else wants me to.  I used to get time to cool down in a special room, but that was taken away.  Now I am asked to do more work.  Does no one see how much work it takes for me to sit here and be quiet instead of screaming because my stomach hurts, I am tired, I am confused, and I can’t ask for help?  Why can’t anyone here see my pain?  I have to learn to read when others are hurting, why can’t others read me when I am hurting?  They teach me to express emotion, and when I do I get in trouble because it wasn’t the right time, the right place, the right proportion, or making sense to them.  I just want to scream!  But I can’t, so I hide in quiet places and play games that calm me.  I am in pain all day.  I can’t take it anymore.

When I get home, I can see my mother is tired.  She wants to help me.  She sees I am in pain and tries to tell my school.  They do not see my pain so they think my mom is the problem.  I don’t have to tell my mom I am in pain, but I still can’t tell her what I need.  If I knew what I needed, I would be like the other kids, right?  It is kind of like swimming.  If you know how to swim when someone throws you in the water, then you will swim to the side.  If you don’t know how to swim, you will flap your arms, and kick your legs, and look as if you want to swim, but you still won’t know how to swim.  Having someone on the side screaming, “try harder” doesn’t help.  Someone asking, “what do you need” doesn’t help because you need to swim and you can’t.  It’s too late for a swimming lesson when you are trying to stop drowning.  Save me from the water, then we can learn to swim together.  Don’t just tell me to try harder.  Don’t ask me what I need while I am drowning.

I have feelings I do not understand.  I know they are sad feelings.  All I can do now is block the world out.  I have tried hard to live in their world, but no one is happy with me.  They want me to be like normal kids, but I am not a normal kid, no matter how much they teach me to be normal, and no matter how much I “act” normal.  I am me.  I am a not normal me, but a valid me.  I can be very good at being me, but I need help, not punishment.  Why can’t anyone hear me?  Why can’t anyone see me?  Why is it always my moms fault, or my fault, when I fall?  Can’t it be the systems fault?  Can’t it just be that this is the wrong path for me?  I am tired of hearing about all the other students and being fair.  No one tries to see the world from my eyes.  I have to go to classes and learn to see the world through normal eyes.  Why don’t the normal kids have to see things through my eyes?  Why are they called normal?  Can’t I just be me?  I am doing all I can.

3 Pairs of Shoes is scheduled for release in August of 2014.

All Alone – Musical Thoughts from the mind of a 14 year old

When I was a young teen, I spent a huge portion of my time alone in my room.  Music was my only voice to the outside world.  It carried on a frequency that seemed to transcend class, race, social status, and age.  The loneliness inside was buried deep, and cast a purple, obstructive hue on everything I I dared to dream about.

I loved music, but complications like dyslexia and my unusual way of comprehending lessons made it near impossible for me to understand musical theory, or even read music well.  All the music I heard around me was trapped inside my head, and played in endless loop.  I feared being driven to the edge of insanity.

One year, my parents purchased a piece of music writing software called Cakewalk.  The software had a special feature that allowed me to click on the musical staff and in real time hear the note through an external midi instrument generator.  For the first time,  I didn’t need to know how to read the music.  I could just click on the staff until I heard the pitch on the midi meet the pitch in my head.  Despite this process being painfully slow, I composed a dozen pieces including a  3 movement Requiem, and a Musical scored for a full scale symphony orchestra.  I even won the Ga State title in composition for a piece called Tarantella Russo.

How Sweet the Moonlight Sleeps – a musical no one has ever heard

My musical came to me during first outpouring of musical compositions at age 14.  A scribbled a basic dialogue, designed a few scenes, and wrote all of the major performance pieces.  It was one of the few times I wrote words along with my songs.

The story is about a girl named Catarina, a lost and lonely girl who is so in love with music she fears she will never have the capacity to fall in love with another, until one day when she meets a guy who hears the same song in the moonlight as she.  Originally, I only shared this piece with family and close friends performed without lyrics or layers on the piano.

After performing this piece in public for the first time at Northern Arizona University, the response was overwhelming.  For the first time, I got to feel the reaction of a crowd to music that poured from the deep inner workings of my my lonely, 14 year old self.  It made me wish I could somehow traverse time into the past and whisper to that girl that one day, her music would connect to others.

I plan on finishing the work I started 22 years ago.  For now, I want to present to you the lyrics to the song All Alone.  You can read along while listening to me perform the piece on my violin.

https://soundcloud.com/thelauranadine/all-alone-performance-version

The Lyrics

The night has just begun, and the moonlight fills the sky,

This eve feels never ending, I should be glad to say it’s mine.

All my dreams away they run, never turn to say good bye,

To them I send my blessing, ‘cause with me they’ll never be.

Here I stand, all alone, underneath the whisp’ring moonlight,

Like a bird, sing a song, soft and sweet.

Can I feel the deep green ocean, and with my dreams set sail?

Can I let my mind come open and my thoughts prevail?

Here I stand, all alone, right beside this star struck river,

Like a tree, stroke the blue and velvet sky.

Will I only see a lifetime, where I walk it’s paths alone?

Will I ever cry a tear of joy?

(Instrumental interlude)

Here I stand, all alone, held within a vast horizon,

Like a rock, stern and cold, but always seen.

I won’t fade into shadows; I’ll stand among the bold.

Mark my words, I’ll march on.

The night has just begun, and the moonlight fills the sky,

This eve feels never ending, why aren’t I glad to say it’s mine?

The Way of the Bonsai

There had been great anticipation inside the hearts of the couple who, one day, gave birth to twin girls.  Their efforts to continue in love, the image of themselves, perhaps embodied in the personality of another, rejoiced in their gift, multiplied by two.

As the girls grew, the parents became suspicious of the twins.  They had been taught how twins are alike; how they look the same, feel the same, act the same, and engage in the same practices of play and preference.  These twins, their precious double gift, were not alike.

The first girl was just like her parents.  Even at the youthful age of 11, she reflected her father’s talent in the fine art of baking.  In school, she outshone her peers in mathematics, just like her studious mother.  This child was talkative, outgoing, and loved to be the center of attention.  She was the best of both her parents.

The second girl was different from her twin.  She did not reflect her parent’s talents, and, in fact, struggled to find her own talents.  She was not a Baker, or a Mathematician, but was fascinated with trees.  Every day, she would return home covered in dirt from digging up saplings, and planting them in small pots on the back porch.  Afterwards, she would spend hours talking to them, singing to them, and pruning them.  This child hardly ever spoke to others, but loved to talk to her trees, and about her trees.

Frustrated that the twins were not alike, the parents took the children to town to seek help.  They wanted to know what was wrong with the second girl.  First, they visited the town Physician. The doctor checked the girls from top to bottom.  Brilliant, but limited only to the teachings of medicine, the doctor said,

“I see your second child is different than your first child, but I cannot find anything wrong with her health.  Perhaps she should be on a different diet.”

And with that, the parents were given instructions on a new diet for the second child.

Weeks passed, and the second child remained unlike the first.  So, the parent’s took the children to the town Psychologist.  The Psychologist checked the girls from hemisphere to neuron.  Brilliant, but limited only to the teachings of the mind, the Psychologist said,

“I see your second child is different than your first child, but I cannot find anything wrong with her mind.  Perhaps she should be in a different class, for people who are different, where she can learn to fit in.”

And with that, the parents sent the second child to a different class.

Weeks passed, and the second child remained unlike the first.  Frustrated, and out of places to take the child, the parent’s returned to town, looking for answers in anyone they could find.  As they walked through town, asking the towns people questions, the second child pulls at her mother’s hand.  Reluctant to go, but wanting to avoid a scene, the parent’s follow the second child into a small, secluded shop of the town flower shop.

The shop was filled with hundreds of tiny trees in pots, just like the second child enjoyed.  The parent’s had never seen this before and were truly awestruck by the tiny forest before them.  Miniature Maples, Pines, and fruit trees were organized neatly into little gatherings, and accented with tiny buildings.  A small model train weaved in and out of the little landscape.  This was unlike most miniature villages, made of synthetic materials.  This was a landscape of living trees, real wood houses, and miniature flowering bushes.  It was as if the town were awaiting real, miniature people.

As they rounded to the back of the store, a man sit trimming one of his little trees.  He was calm, happy, and welcoming.  He looked up from his work, and smiled.  The parents, doused in shock, muttered out their question.

“What is it that you are doing?”  The mother asks.

“I am pruning my tree using the art of Bonsai.”

“Bonsai?”

“Yes.  It is an ancient art form of growing and pruning real trees to grow in containers.”

“You mean, you train the trees to grow how you want?  Well, then, maybe you can help.  My second child is supposed to be a twin.  But she is different from the first.  I have been searching for the way to make her the same as the first, but no one has been able to give us a way that works.” the mother explained.

“Which one is different?”

“The one unlike her parents.  The one unlike her twin.  The one who obsesses over tiny trees, like you.”

“Ahh, I see.  So you have come here, seen my obsession of tiny trees and hope that I have the answer.  Hoping, I have the way to make your second child not seem different.”

“Yes, exactly.”

Without warning, the Bonsai Master steps behind a wooden louvered door.  Minutes roll by, and the parent’s begin to fear that they have offended the man.  Just as they are ready to give up and leave, the Bonsai master returns with a pair of scissors, and lays them on the counter in front of the parents.

“This will solve your problem.  These are special scissors designed for trimming Bonsai Trees.”

“Oh, I see.  You want me to give these to my second child so she can learn, through the art of Bonsai, how to train herself to be like us.”

“No,”  answers the Bonsai Master, “the scissors are for you.”

“For me?”

“I prune the trees to realize their full potential, even when their space is limited.  The tree trains me.  I learn from the tree, and the tree benefits from my hard work.  But, not all Bonsai are the same, and this is good.  It makes for a more interesting forest.  You must learn from the tree.  You must see the tree as the child.  You must prune the child to realize her full potential, even when her world is limited.  The child trains you.  You learn from the child, and the child benefits from your hard work.  But, not all children are the same, and this is good.  It makes for a more interesting world.”

“And this will fix my child?”

“This will fix your view of your child, and she will no longer seem broken.”

-LN

It’s All About Sex, So Quit Dragging Empathy Out Back For A Beating

My response to Eustica Cutler on her Daily Beast Post Autism and Child Pornography: A Toxic Combination

Opening Statement

Before I begin, I want to make it absolutely clear that I do NOT support the use of child pornography for ANY reason. Sex crimes, especially those committed against children, are WRONG.

I have spent the better part of my life, post autism diagnosis, speaking about the strengths of autism. When talking about sensitive topics, I spend hours mulling over vocabulary to make my writing as universally friendly as possible – keeping my writing appealing to all no matter their neurological profile, race, gender, or age. On occasion, I have been bold and piercing with my opinions, but I try to reserve that for places where I felt boldness was warranted – i.e. my writing on the Autism Industry. At any rate, I carefully filter myself using techniques I learned in therapy so that common ground of acceptance and awareness is met.

Today, however, I will use no such filters. Today, I will write unfiltered and unbridled on the topic. Why? Why do I take this risk of offending others? I am not coming to you today to purposefully offend, nor am I abandoning my goal of acceptance and awareness. I simply feel that this topic is tiptoed around too much, and so taboo, that being too careful will only muddle the point. I want to be clear, and to be clear I must be uninhibited by rules of social acceptance. Thus, you have been warned.

“Whatever is good to know, is difficult to learn.” – Greek Proverb

The Background

On 5 August 2013 Eustacia Cutler, mother of Dr. Temple Grandin, published an opinion piece in The Daily Beast entitled Autism and Child Pornography: A Toxic Combination. My reaction to her conclusion was so intense, that I had to spend 5 hours, collectively, sorting my emotions, typing my reactions, and grounding my nervous system. At first, I made a list of all the terms that spiked mental activity for me, such as “skewed neurology” when referring to autism, “kids want to learn sex from kids,” and “where is the father that should be guiding him.” I could write pages on her article alone, not to mention all the reading it spawned for me to be prepared to write my response today, informed.

Not long after her post, John Elder Robison prepared his reaction in Psychology Today entitled, Autism and Porn: A Problem No One Talks About. John carefully addressed his view of the topic, laying out 5 problems why Eustica may be correct in many ways, though not in all. He made excellent points about law enforcement, but I still felt left in the cold.

If you haven’t read the articles yet, I encourage you to do so before moving onto my reaction. The links are in the footnotes.

Train Wreck

After all of the reactions were tweeted, posted on Facebook, or published in online news periodicals, the truth of the matter presented me with a train wreck of ideology, misunderstanding, fear, and ultimately judgment. Squeezed in under the headline of Child Pornography, were three very distinct topics, yet everyone was speaking in generalities and a homogeneous tone.

It is unfair, not just to autistics, but to humanity to use the conviction of a pedophile as a springboard for a public flogging of the sexuality of autistic people. Not to mention, the complete ignorance of the details of the case of the Pedophile who happened to be autistic, which Ms. Cutler failed to provide. People of all different neurological profiles commit crimes, so lets not jump on the assumption bandwagon about the particulars of a case not published.

Out of deep respect for my own right to feel empathy, and engage in meaningful sexual relationships, and to even the playing field, I must address all three of the topics that lurk in the backdrop of Ms Cutler’s article – sex in society, sex in autism, and their ugly stepchild – the use of neurology to subjugate autistics.

The article in question, in my opinion, really had very little to do with child porn. Most of the argument she held had much more to do with sexuality, not pedophilia. There is a very distinct difference between the two.

Sex in Society, We Fear Sex Because We Fear Death

No one wants to talk about sex. We attempt to regulate sex, we throw our morality and our religious beliefs at sex, we even punish those who are open about sex. Sex in our society is unspeakable to so many. In my observation, we live in a society that is more comfortable with violence than with sex, something that continues to baffle me.

Why are we afraid of sex? Austrian Psychoanalyst Otto Rank suggests it is because it reminds us of our mortality. He points out that sex is a physical act used to procreate, mostly, and that is in direct violation of our societal belief that we are spiritual beings. In fact, much research has been done on the tie between fear of death and fear of sex. A very interesting write up on the topic was published in the Journal of Personality and Social Psychology in 1999.

Because of this fear of sex, we in turn fear talking about sex. I was reminded of this concept when Ms. Cutler was addressing sex education. She had gone on for a few paragraphs about how ASD boys were looking to the internet to learn about sex. Ms. Cutler then said, “He may know the physical steps of the act, he may even have learned them by heart, but that won’t help him get to the heart of the matter. In other words, where is the father who should be guiding him?” She added later, “Absentee dads are not likely to be around at the critical moment.” A shocking conclusion from a woman who was once told that refrigerator mothers were to blame for autism.

Since when did we learn about sex from our parents? I think my male friends learned more from the Sears Catalogue, National Geographic, and eventually their father’s Playboys than they did from talking with their parents. According to a poll given to parents by Planned Parenthood, 43% of parents are uncomfortable talking about serious sex topics with their children. Given our nations high teen pregnancy rate, the talks that are going on seldom include details on birth control. And, when sex is addressed, how many parents talk about pleasure in sex? Style? Position? Though I agree there is an absent father problem in autism, this is not what leads autistic kids to porn.

Humans in today’s society as a whole learn about sex through trial and error. When we aren’t feeling satisfied, or we just want more pleasure, we look to porn. Why? It’s everywhere and very easy to access, and for the most part, we just like it. Yes, even the most conservative of humans like porn, even if they do not admit it. How do I draw this conclusion? Well, during this session the more conservative states, and even conservative senators, are pushing legislation to regulate abortion, birth control, and close Planned Parenthood clinics. How many pieces of legislations have conservatives pushed this session to close down all pornography? In fact, when porn is attacked, we as a society see it as an attack on freedom!

Therefore, our fear of sex keeps us from addressing a very important aspect of fulfilling human interaction.

Sex in Autism, We Fear Sex in Autism Because We Fear Autism

If our society struggles to talk about sex under normal circumstances, we will not be any better when it comes to sex in autism. What frustrates me most about discussing this topic here is that I must do so in opposition to those who continually reduce the sexuality of an autistic person to animality. I feel as if the Neurotypical world fears that autistic people will succumb to dry humping someone’s leg, like my neighbors Chihuahua, simply because we are too “skewed neurologically” to control ourselves.

When it comes to sex in autism, we are still overburdened by the daily misunderstandings of autism itself, making the application of what society believes they understand about autism act more like a spotlight than a vision of clarity. In other words, the flaws in our conclusions on autism are made obvious when applied to the traits and behaviors that are shared by Autistics and NTs.

For example, let us momentarily adhere to the conclusion that Autistics do not desire human contact and that we lack empathy, as many believe. The act of sex is believed by society as a whole to be an act of love, filled with empathy and the longing for human contact. If someone with autism falls in love and, furthermore, desires a sexual relationship with someone, this act is in direct violation of societal conclusions on both sex and autism. Searching for answers, the sexuality of autistics are analyzed like an episode of wild kingdom.

To take this example further, if a person with autism is caught viewing inappropriate material, such as child pornography, this must be a direct result of the autism’s lack of empathy, and lack of theory of mind forcing the person with autism to not know right from wrong. Even Mr. Robison made this conclusion about Theory of Mind in his article.

But what if we are wrong about autism? Perhaps the man is a Pedophile, who happens to have autism, with one not directly effecting the other. Perhaps the man views the material, not because he is attracted to children, but because he views himself as a child who is attracted to older sexual partners. Both scenarios can exist outside the autistic world.

Society tends to look at autism in adults through two lenses; they either see us as too innocent to know any better, or criminalize our acts. When we learn to pry personality from autism, seeing Autistics as people first, and autistic second, only then will our lenses be changed. However, there is a fear of autism. A fear of autism that stems from the emotional desire of immortality through our children.

Therefore, our fear of autism keeps us from addressing a very important aspect of fulfilling human interaction for those of us with autism.

The Use of Neurology to Subjugate Autistics

Bigotry exists in society in many ways, but very few talk about the micro-inequities that lead to the subjugation of people with autism. The term micro-inequities, coined by Dr. Mary Rowe of MIT, are the tiny pieces of bigotry in the actions and words of society that go by unnoticed, but still obscure the view of the target group. She explained micro-inequities by comparing them to Saturn’s rings. Saturn’s rings are made only of little pieces of ice and sand, but partially obscure the planet. One example of a micro-inequity would be using the word “she” when referring to a bad driver, but you cannot verify seeing the gender of the driver who was driving poorly.

One area where micro-inequities towards autism are visible, is in the discussion of autistic sexual behavior. While people with autism remain mostly excluded from the conversation, society is bombarded by videos, books, and lectures itemizing aspects of our lives for public dissection. Much like what traveling shows did to African Americans, caging them naked to be gawked at by onlookers, I feel autistics are caged by arbitrary definitions and gawked at by an all too eager public looking to free themselves of blame.

In the case of Ms. Cutler’s article, the public perpetuated what should have remained an obscure opinion piece, but because they look to professionals to lead them to answers that agree with their personal outlook, the article was popularized. Just because Ms. Cutler has a successful autistic daughter, and just because she has spoken many truths, does not make her infallible. In fact, I feel her article drove her point by using the micro-inequities against autism that are rampant in society.

We with autism have opinions. We have personalities, desires, needs, wants, and crave love from other humans. To talk about our sexuality, to talk about our desires, while excluding us reinforces the concept that we are less. Reducing us to animals, however, comforts the NT world to some extent, because only then is there justification for continuing to ignore taboo topics that interfere with the social training of autistic people. We with autism must continue to redefine autism, and make it our own.

Links:

Social Problems: Understanding Emotions and Developing Talents
Temple Grandin, Ph.D. – http://www.iidc.indiana.edu/?pageId=600

Microinequity – http://en.wikipedia.org/wiki/Microinequity

7 Types of Racism – http://www.aboriginalhr.ca/en/programs/RFWS/nl4/2

Why people use porn – http://www.pbs.org/wgbh/pages/frontline/shows/porn/special/why.html

Autism and Child Pornography: A Toxic Combination – http://www.thedailybeast.com/articles/2013/08/05/autism-and-child-pornography-a-toxic-combination.html

Autism and Porn: A Problem No One Talks About – http://www.psychologytoday.com/blog/my-life-aspergers/201308/autism-and-porn-problem-no-one-talks-about

Pedophilia – http://en.wikipedia.org/wiki/Pedophilia

Death, Sex, Love, and Neuroticism: Why is Sex Such a Problem – http://www.radford.edu/~jaspelme/_private/gradsoc_articles/terror%20management/terror_management_n_sex.pdf