Category Archives: sensory integration

Trauma & Autism

Studies confirm that people who are Autistic often respond to stimuli more intensely than those who are not.  Hypo and hyper sensitivities are often discussed when it comes to vision, taste, hearing, smell and touch in Autistic people.  Often there is a mixture of both hyper and hypo sensitivities in any one person.  (I use these terms because we have a lack of good words to describe these things.  Both hyper and hypo sensitivities are subjective and are used in comparison to non autistic people, which is problematic in and of itself, but for the sake of this post, it is the best language I have.)  What happens to a person who experiences the world more intensely than the majority of people, particularly when confronted with frightening situations, anger, loud noises, etc?

Recent studies have confirmed that children with autism have very active Amygdalas; the center of the brain that stores traumatic events.” Traumatizing Events and Autism

When Emma was just two, we went to visit my mother, the proud owner of an adorable German Shepherd puppy.  Emma had no fear of dogs, but during that visit, the puppy playfully chased Emma, nipping at her ankles and Emma began to scream in terror.  By the time I was able to rescue her, hoisting her up in the air and away from the puppy’s sharp little teeth, the damage had been done.  To this day, Emma is frightened of dogs and upon seeing one that gets too close, she will cry, “Mommy pick me up!”  Despite the fact that Emma is now much older, the trauma is real and intensely felt.  For years I couldn’t understand how something so (seemingly) benign could cause her such incredible, and to me anyway, over-the-top terror.  I continued to believe this was a fear she would “outgrow” and that it was only a matter of time before she did so.  But so far, her fear, while not as extreme as it once was, is very much intact.

I am on a family picnic.  My parents pull out a french baguette, an imported pâté, a coveted gift from my father’s sister who lives in Paris, and some Swiss chocolate.  I am hungry and excited as pâté and chocolate are two of my favorite things to eat.  On the way home I begin to feel sick.  By the time we return home, I am vomiting and have the flu, but associate the feeling of nausea with the pâté.   It is almost two decades before I can stand the smell of pâté, let alone taste it without gagging.

These are both relatively benign examples of sensory issues intersecting with memory and causing longer term associations, but what about intense trauma such as physical and emotional traumas?  What about the time when the ABA therapist locked Emma, who was only three years old, in her room for 30 minutes, instructing me to stay out or he would pull all our services, while she screamed and begged to be let out?  I know how traumatized I was and continue to be because of those 30 minutes, what about Emma’s experience?  Did this cause untold damage?  Did Emma experience the degree of trauma that I did?  Is her experience even more profound?  What about how she experienced her own mother not saving her from such a person?  How has she integrated these events into her life experience?  Is it felt as the ultimate betrayal?  How will it manifest in the future?

These are the things I think about.  Not because I am intent on beating myself up, but because these are things that happened and I don’t think any of us are served by NOT talking about them.  These are the kinds of dilemmas many parents have experienced.  These are the questions so many of us have. Questions that are, as yet, unanswered.  We have to ask ourselves when we are considering a methodology and those who will come into contact with our children, are they going to be respectful and kind?  Does this methodology presume competence, is it respectful of my child?  Will the person be patient? Will they treat our children as inferior because they see autism as an inferior neurology and one that needs to be “trained” away?

What does trauma do to the brain?

“Severe or repeated trauma can re-route emergency systems that are meant to be used only occasionally, and leaves them active, like a switch stuck in the “on” position. This can shrink or damage the part of the brain that thinks and plans, and potentially damages the brain’s ability to feel love and safety in the presence of others.

“To deal with this pain and stress, the individual may become more rigid and inflexible in his or her thinking and develop tunnel vision and selective listening. Over time to compensate for the damage done to the short term memory and ability to sequence by continued exposure to our fight or flight response, or allostasis, the individual may develop rituals, become rigid and controlling or “oppositional”, shut down, withdraw, rage, retreat into a special place, or become over-involved in things that help the individual to escape.” ~ Autism and Trauma:  Calming Anxious Brains 

It is tragic that the very methods a traumatized Autistic person may use to calm themselves from the trauma they’ve experienced, are often the very things those who are not Autistic pinpoint as “behaviors” or actions that must be stopped.   Not only is the person trying as best they can to deal with the initial traumatic event(s), but they are often being punished and told to stop using the only ways they know of that actually help them cope, thus creating further trauma.

Traumatic events often occur during developmentally vulnerable stages in the individual’s life, and in this process become intertwined with the child’s bio- psychosocial development. How easy it would be to dismiss this in a child with an ASD, who by definition is struggling with development of a sense of self, and is uncomfortable in an alien world, even prior to repeated exposure to trauma.” ~  Commentary: Complex Post-Traumatic Stress Disorder. Implications for Individuals with Autism Spectrum Disorders—Part II 

Trauma, in relation to autism, is something I wish I’d heard about during those first few years so that I might have made better and different choices for my daughter.  Those I know who are Autistic talk about their trauma often, yet there is very little written about trauma in relation to autism in the general conversations currently going on.  This must change.

Em with the dogs

Synesthesia

I cannot stop thinking about some of the things people have written regarding pain or doing things that others perceive as painful, but that they perceive as relief or calm or being more present.  One person described it as feeling “organized.”  And then there are the people who described various types of synesthesia coupled with pain.  So I wanted to circle back to synesthesia specifically as this is something I know little about and I’m assuming many others may be unfamiliar with it as well.

*For those of you who are synesthetes, please jump in and comment or email me (emmashopeblog@gmail.com) privately.  Anything you tell me will be treated as confidential unless you give me permission to quote you, I will paraphrase and not use your name.

There are a number of interesting websites (these are just a few I found particularly interesting, but there are dozens more):  Neuroscience for Kids – Synesthesia,  American Synesthesia Association,  Brain Pickings, ScienceBlogs and Synesthete.org explains:  “Synesthesia is a perceptual condition of mixed sensations: a stimulus in one sensory modality (e.g., hearing) involuntarily elicits a sensation/experience in another modality (e.g. vision). Likewise, perception of a form (e.g., a letter) may induce an unusual perception in the same modality (e.g. a color).”  Synesthesia is thought to be inherited affecting 2-4% of the population, though there is no evidence to suggest a higher prevalence of synesthesia in Autistics and it seems women are more likely to experience it than men.  *It must be noted, everything I’ve written in this paragraph was gathered on the internet and almost all of the various articles are written by non-Autistic people.  I have added links to the original sources throughout.

Someone described how they can smell colors and another wrote about being able to smell people’s emotions.  They described being able to smell someone they saw from a distance or on television.  Another person wrote that when they meet someone they see color.  Someone else wrote about how a particular self-induced pain causes them to see the most beautiful flashes of colors, exquisite and unique and unlike anything they’ve ever experienced.  And still others talk about how numbers or letters have personalities, this is called, ordinal-linguistic personification. One person described it as a numeric “soap opera” and said, “2 and 4 are in love, but 3 hangs around and is like an annoying little brother, always wanting to be included, but nobody wants him around.”

I found a great post by Jessica Bagnall entitled, Synesthesia-Why My Numbers Have Personalities, she writes, “Five is a businessman that has a half-relationship with Eight, though he is unable to commit. He is flaky and often impossible to get hold of, though he tries to be more stable. He is the older brother of Seven.

And then I read this Autism and Synethesia (the mis-spelling is on the site):  “On a whim, I asked my son Tom, age 11, if he sees colors when he plays notes on the piano. Tom, who is diagnosed with high functioning autism, plays both piano and clarinet. Oh, yes, he said, he does! Here are the note/color correlations he gave me, right off the top of his head:

  • C=red
  • D=orange
  • E=yellow
  • F=green
  • G=blue
  • A=”pink”
  • B=violet

I drew a series of dots in the colors he gave me, and asked him to play them on the piano. He played Frere Jacques flawlessly.

I looked up synesthesia, and found that there’s a close link between synesthesia relative to music – and perfect pitch (which Tommy has).”

I have to wonder whether my daughter experiences some version of synesthesia and if most who are profoundly moved by music do as well.  Which then lead me to think about art, poetry, writing, painting, sculpture and dance.  Are all of us born with some degree of synesthesia, which we then lose as we mature?  Just as all of us are capable of learning many languages as young children, but as we grow older acquisition of other languages becomes increasingly difficult, is this true with synesthesia as well?  As with so much surrounding neurology, I find the more I learn, the more questions I have!

To all of you who have shared your stories – thank you.  Many of you have shared incredibly personal things and I’d like to acknowledge that and tell you how grateful I am.  So thank you, really, thank you for being willing to describe such personal things.  I am profoundly grateful to all who’ve reached out to me.  I hope I’m doing your experiences justice in these posts.

Em at dusk running through the sprinklers on the ranch – Summer 2011

Back Camera

Sensory Overload and Sensory Cravings

My friend Ibby posted this video on her Facebook timeline (for those triggered by loud noise, flashing lights and/or prone to seizures, do NOT watch or at least turn the volume way down and stand back)  

A twitter friend, after I reposted this video, wrote that this was why he wears headphones and I tweeted back that while Emma is sensitive to some noises, for the most part she craves noise and typically turns the volume up as loud as it can physically go on both music and favorite movies, much to the horror of our various neighbors.  Even though we live in New York City (a place that is, for many, a sensory overload), people get cranky when woken at 6:30AM on Saturday morning to the strains of Michael Jackson’s Beat it.  Even hard-core MJ fans protest at the volume Emma prefers and at that time of day.

My twitter friend tweeted back, “I like certain noises, Avenge Sevenfold. ;D  It’s noises other than the one I’m trying to focus on that are the problem.”  And this is exactly the important distinction that I often forget or have trouble understanding.  Unless you have sensory issues, like the ones depicted in this video, I think it’s really hard to fully understand how debilitating sensory overload can be.

A couple of months ago I went to do our weekly grocery shopping run at Whole Foods.  Typically I go every Saturday in the early afternoon.  This is a time that isn’t too crazy, the lines aren’t insanely long and often it’s even comparatively quiet.  As I stood in front of the check-out person, the cashier next to her began loudly unfolding a paper bag.  The noise was deafening, a kind of snapping sound followed by crackling.   I actually felt physical pain from the noise.  My cashier looked over and laughed and then another cashier did the same thing with one of her bags.  In response the first guy did it back and suddenly I was in the midst of a cacophony of bags being banged opened, like a series of gun shots going off.  It was horrible. I stood there stunned.  I became so disoriented I could barely think and then I felt a surge of rage. How dare they make this kind of noise with those paper bags! How dare they behave this way!  I looked around trying to figure out who I should direct my anger to and noticed that not only were they smiling, some were even laughing and so were the other customers.

They were having fun!  I was astonished.  What was so incredibly painful to me, was amusing to others.  As I left the grocery store I reflected on sensory issues and how overwhelming they can be. I thought about Emma and wondered what it must be like for her.  Does she feel this way when she needs sensory input and cannot get it or is told she must turn the volume down?  I know there are certain noises she cannot tolerate, like the cuisinart.  She hates the sound it makes and will only tolerate it if I allow her to control it and put it on “pulse”, the same goes for the electric mixer.  If one of us sings along to music she’s listening to she can’t stand it and puts her hands over her ears.  (I completely understand her doing this when I sing, I’m pretty much tone-deaf and it IS painful to listen to for even those with no sensory issues, but she does this to anyone who sings along.)

After watching the video I posted above, I was grateful for the ending.  Not because it changed anything or showed some obvious solution, but because it was one human being taking the time to notice another human being in obvious pain without judgment or condemnation.

As an aside – I would love to hear from those who need and crave sensory input.  What is that like?  What does it feel like?  Is there anything you’ve done that has helped you.  Any advice or ways we can make your life more tolerable during those times?

Emma – 2007 – Auditory Integration Therapy

Em

In the Playground – Autism

Yesterday while at the playground, Emma pushed a little boy off of a roundabout.  It wasn’t clear why she did this, though it reminded me of a game they played at camp where the little girls stood in line by the pool and then pushed the girl in front into the water.  (I can hear the defensiveness in this sentence, I know. But let me continue.)  The boy was seated on the edge of the spinning circle, like a giant saucer, filled with a dozen other children.  A few children were on the ground pushing, while running to make it go faster.  The children seated within the saucer were shrieking with laughter and then the little boy went flying off.  The child’s mother, understandably upset, was furious with Emma and yelled at her that this was unacceptable behavior.

I was seated with a friend of ours whose son was playing with Nic.  I noticed Nic staring at me with a horrified expression and making gestures with his hands for me to come.  When I reached him he told me what had happened.  “She just pushed that kid off, Mom.”

“Which kid?” I asked Nic.

“That one,” he pointed to a young child being led away by his mother.  “We were all just playing and this one kid was spinning the thing around really fast.  Emma was laughing and that boy was sitting pretty close to the edge and then Emma just pushed him and he went flying.  The mom got really mad and started yelling at Emma.”

“Okay.  Thanks Nic.”

I made Emma get off and had her sit on a bench next to her father.  I told her she was to sit still until I returned.  I then ran after the mother and her son, apologizing and explaining to her that Emma has autism.  I told her how very sorry I was and inquired after her son, who seemed frightened and confused.  I told him Emma hadn’t meant to hurt him.  The mother told me, with an apologetic look that Emma’s behavior wasn’t okay.  I nodded my head and agreed with her.  She then said, “Oh dear, I didn’t know.  I hope I didn’t scare her when I yelled at her, but I was so upset.”

I assured her that Emma was fine and again apologized for Emma’s behavior.  When I returned to where Emma was seated I said, “Emma.  You cannot push other children.  It is not okay to do that.  You could have hurt him.  Do you understand that, Emma?”

“You cannot push,” Emma said, nodding her head.

“That’s right.  You cannot push.”

“Go back?”  Emma asked, pointing to the spinning saucer.

“No.  You can sit here next to me.”

“One minute,” Emma said.

“Ten minutes.  You will sit next to me for ten minutes Emma.  And you may not play on that again.  You can run around and do other things.  And Em, if you push again, you will go home.  It’s not okay.  You could have hurt that little boy.”  Emma looked down at her hands.  “Do you understand, Em?  It’s not okay to push.”  I watched her for any sign of understanding.  She continued to stare down at her hands, which were in her lap.  “Em.  Do you understand?”

“Yes, mommy.  You cannot push.  It’s not okay.”

It is times like these that I feel at a loss.  We so rely on communicating through speech that these sorts of situations feel impossible with Emma.  She showed no sign of understanding, she wasn’t angry, she didn’t seem particularly upset, if anything she seemed completely baffled by the whole situation.  “Emma.  Why did you push him?”  I finally asked.

“You pushed.  It’s not okay to push,” was her response.

One hears about aggression in children with autism all the time.  Emma, when upset, frustrated or angry, usually hurts herself.  Biting her arm or hand is her most common reaction, but a few times she’s thrown something or punched herself in the face.  It is difficult to witness these acts of violence against herself.  It is even more difficult to make her understand why it’s not okay to hurt herself.

But this episode in the playground was different.  Emma wasn’t acting out in anger, evidently she’d had no interaction at all with the little boy she pushed.  What was going through her head?  Why did she push him?  It’s impossible to know.  But I do have a few ideas, none of which dismiss her behavior, but they do explain what may have happened.  Emma craves sensory input.  Often children who crave vestibular movement can be calmed by having ten minutes or so of it.  Emma appears to never be satisfied no matter how much she gets.  Richard and I have had countless conversations with her various therapists about this.  In our neuro-typical world we call people like this “thrill-seekers”.  In the world of autism it’s called sensory integration disorder –

Someone once explained to me that it’s a bit like having a body part fall asleep and the desire to stomp, pinch or hit that body part in the hope of “waking” it. Roller coasters, swings, trampolines, carousels, anything that moves quickly and erratically are Emma’s way of “waking”.  Pushing the boy was not an act or display of aggression as much as it was an unconscious response to her craving more movement.  It may be that he brushed against her by mistake or perhaps he was too close to her or she may not have been aware of him at all.  Unfortunately none of this helps the child who was pushed or his mother.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Pain

When Emma was a toddler, about a year old, maybe two years old, she had a little scratch from the tag on the back of her shirt.  It seemed so insignificant, hardly worth noticing, except that Emma screamed as though her entire body had been scalded.  I remember at the time thinking it strange, that her response seemed too extreme for such a tiny scratch.

There were other incidences which also caught my attention for the very opposite reason.  She would stub her toe or get scratched by a cat or have a huge knot in her hair, none of which would cause her to even gasp.  When she grew older I was terrified of the day when she would start to lose her baby teeth, convinced this would set off such cries of pain, with no remedy other than to wait until the tooth came out of it’s own accord.  However this was not to be the case.  In fact, Emma grabbed hold of the loose tooth and simply yanked it out of her mouth, dropping it to the ground, as though it were nothing more than an irritant, like a pebble in ones shoe.  Evidently her school bus is littered with her baby teeth as she would board the bus in the morning with a loose tooth only to come home and announce, “Threw it away,” when asked what happened to her tooth.

“Where?  Where did your tooth go?” we would ask.

“On the bus,” Emma replied matter-of-factly more than once.

About six months ago Emma was reported to have said to Joe, “Joe!  Pull it out!” and then opened her mouth so that he could remove the offending tooth, which he didn’t, so she did.  Joe was able to intercept the tooth before she was able to toss it in the gutter.

I don’t think we have more than two or maybe three of Emma’s baby teeth, despite the fact she’s lost at least eight or more by this point.  We tried to tell her about the tooth fairy, but she was utterly uninterested and wandered away before we had finished.  The idea a “fairy” would come to gather up her loose teeth, leaving behind money, was not a concept Emma had any use for.

Last Friday Joe called to tell me Emma was whimpering and saying her ear hurt.  I immediately called the pediatrician then looked at Emma’s throat for signs of strep.  Sure enough there was the tell tale white spot on one side of her throat.

“No say AHHH!” Emma said, pointing at her throat.

“Well, let’s wait and see what the doctor says, Em.  Does your throat hurt?”

“Yes.  Ears.”  Emma replied.

“Your throat and your ears hurt?” I asked.

“Yes.”

I remembered the last time I’d taken her to the pediatrician because her ears were bothering her, only to be informed that in fact she had strep, again.

Upon our arrival I proudly stated that I was sure it was strep and went on at length about how I couldn’t believe Emma had somehow contracted strep making this the third time since the school year began.  The pediatrician smiled and nodded her head as she examined Emma who kept insisting “No AHHHH!”  Meaning she didn’t want to have the doctor swab the back of her throat.

“Just ears,” Emma said repeatedly.

The instant the pediatrician looked in Emma’s left ear she looked up and said, “Raging ear infection.”

“What?” I asked, thinking I’d misheard, so convinced was I that Emma had strep.  “But what about that white dot on her throat?”

The pediatrician shrugged.  “Could be food, not sure, but her ear is bright red.  An ear this red should be extremely painful.”  She said looking at Emma.  “I’m surprised she isn’t complaining more.  It’s a really bad infection.”

I watched as Emma played cheerfully with the doctor’s stethoscope.  Observing her, one would never know her little body was host to a horrific ear infection.

“So that’s it?” I asked, still unable to believe she didn’t have strep.

“Yup.  Antibiotics will clear it up, but give her children’s advil in the meantime, that ear has got to hurt,” the pediatrician said.

By the time I had procured the prescription and the children’s advil and returned home, Emma was running around, playing happily.

“Hey Em.  How do you feel?  Does you ear hurt?”

“Yes.” Emma said before racing off down the hall with Joe in hot pursuit.  Shrieks of laughter could be heard.

One of autisms defining features is what specialist call sensory integration issues.  They can range from hypo to hyper and are often a mixture of the two.  In Emma’s case she has both and we still cannot anticipate which one we are witnessing.