Tag Archives: sensory overload

Sensory Assaults

My friend Bridget wasn’t feeling great.  She felt off-balance and couldn’t walk and it was making it difficult for her to talk.  And then she told me the carpeting made her dizzy.  I hadn’t noticed the carpeting, but when she said this to me, I realized the pattern of the carpet was like an op-art nightmare, in sharp contrasting hues, the repetitive pattern was eye-catching and I suddenly wondered how I could have blocked it out.  But, you see, I had.  The carpet wasn’t a problem until she mentioned it and then I couldn’t not see it.  In addition, there was a plexiglass barrier that gave the sensation of being in an infinity pool, without any of the relaxation involved.  It was as though the carpeting spilled over the edge and disappeared into an abyss.  It was disconcerting and even frightening.

I held out the crook of my arm, the way a blind man in New York City taught me to do, years ago.  A stranger, he’d asked if I could help him cross a busy intersection.  At the time I was carrying my son in a Kelty pack on my back and had my then infant daughter in a snuggly.  When I offered my hand to the man, he told me it was easier for him if I crooked my arm and he then held that, it was more stable, but also gave him the ability to control his own movement more.  Bridget took my arm and we were able to make our way to the elevators without mishap.

It was like pain, you don’t realize how awful it is until it’s gone, and then you’re filled with indescribable relief that makes you hyper aware and surprised by just how bad the pain had been.  Afterwards you wonder how you managed it.  Realizations are like that.  Once you have them they’re impossible to undo or un-think or un-feel.  This is how it is with autism too.

A few months ago I was waiting for the cashier to ring up my groceries.  Suddenly a load bang sounded.  Without meaning to I jumped and turned toward the sound.  It was another cashier smacking a paper bag open.  She was smiling and the cashier next to her did the same thing.  Other cashiers began to laugh and followed by banging their bags open.  I was furious.  The noise felt intolerable.  I wondered what I might say to make them stop.  I went through various scenarios in my mind, from yelling obscenities, to self-righteous indignation, to calling the manager.  And then they stopped.  The deafening sound that felt like a physical assault ended and I realized I’d been holding my breath.

As I walked home with my groceries I thought about how angry I’d gotten and how my body froze and then I thought about how awful it would be if I was assaulted, bombarded with intolerable sounds all the time or lighting that had a similar effect and suddenly, very suddenly, I understood something I had not understood before.  I understood what people meant when they suggested that sensory issues can affect one’s actions, or as they say when referring to autism – how sensory issues can result in “behaviors”.

Had the banging noise continued in the grocery store I would have said something, and it would not have been kind or thoughtful or restrained.  I would have had “behaviors” as a direct result of that awful noise.  Had someone told me to calm down I would have been even more furious.  My actions would most certainly have been viewed as over reacting or needlessly extreme.

Had I not been present when my friend Bridget told me how awful she felt and that she needed to sit down for a second and then told me why, I would not have noticed the awful carpeting nor would I have understood how the pattern of a carpet could disrupt one’s equilibrium so much so that one might lose the ability to speak.  These are the things I am learning.  These are the things that make the difference between understanding, and maybe even being able to do something helpful and not.

An Innocent Paper Bag...

An Innocent Paper Bag…

Raging Screams and Shame

The other week I was present for the following typed exchange by two people.  Both are Autistic and both cannot use spoken language to communicate.  (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)

Layla:  You have an extremely loud stomp.  (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)

Jerry:  Is that a guess or are you certain?

Layla:  If you tried to hide it then you gave away the secret.

Jerry:  That is what I am behaving like on some days but proud I am not.

Layla: I heard it all and was curious and wanted to give help.

Jerry: Really do you believe that I am not evil?  (J. turns his head so he is staring down at the table.  His body is completely still.  It is a noticeable change from the way he usually sits while having a conversation with Layla.)

Layla:  Evil is not this and best to forgive yourself.

Jerry:  Thank you for not judging me.

Layla:  I  only ask for the same respect.

Jerry:  The deal is on.

I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood.  Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment.  As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.

As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality.  Jerry expressed profound shame and upset and Layla responded with  identification and deep compassion.

Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night.  I wrote about that ‘here.’  One of the things she typed was:  “Pounding terror is all that remains.”  More recently she wrote, “The raging screams in my head are starving and want to consume me.”

Raging screams…  Pounding terror…

August, 2014

August, 2014

Demanding Speech

Over the weekend I witnessed a young man who did not easily speak and when he did say a word, it was clear how hard he was having to work for that one syllable.  Yet the people around him bombarded him with questions.   Questions he could not answer with spoken language, but that did not stop them from asking.  When he managed to make a sound resembling the answer they wanted, they would pause for a moment before asking him another question.  After about ten minutes of this he retreated into what looked like a sensory friendly room, where he rocked gently back and forth, holding his hands over his ears.  Even so, the questions continued.  

Another boy who was having his lunch was told during a ten minute time period to “look at me” more than a dozen times.  He too could not easily speak and was asked a great many questions.  Things like, “Is that good?” When he said, what sounded like, “Yes,” the other person said, “Look at me.  Stop.  Put down your fork.  Look at me.  Is it very good?”  When he again said, “Yes,” he was allowed to eat his lunch for a few seconds in peace before the next question came.

People often ask me why I object to ABA therapy.  It is not only ABA therapy that I object to.  It is ANY therapy that treats another human being as these very well-intentioned people were treating these young people, all of whom were teenagers.  I object to the way so many, who are in the field of autism are trained and how that training  affects how they speak to and interact with people who are autistic.   I do not, for a moment, doubt that they believed that what they were doing was good and ultimately helpful to the kids they were working with.  Yet each one of them was unconsciously or not, treating those kids as though they could not and did not understand what was being said to and about them.  The kids were not being treated as one would treat their same age non autistic peers.

On the Presume Competence – What Does That Mean Exactly – post I wrote, “What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.”

What I saw was fairly typical of what I see often – well-meaning people who are working with autistic people, but who do NOT presume them competent, not really.  Had I said something to any of these people, I’m sure they would have expressed surprise with my observations of what they were doing and how they were interacting.  I would even guess that they would have told me that they were presuming them competent.  These were not mean people, they were not sadistic people, these were people who believed in the training they’ve been given and believed this was the best way to interact with these teenagers.

At one point the young man who was trying to eat his lunch, looked over at me and my son.  My son, smiled at him and I did a little wave and said, “hi.” He nodded his head ever so slightly at us and then the person who was paid to sit with him, asked him another question.  I do not doubt for a second that all the kids there were competent.  In fact I am convinced of it.  I know it to the core of my being as I have been around so many people who cannot speak, or who can speak, but not easily or naturally and who are all competent.  But this was not how they were being treated.  This idea, which is popular with a number of therapies, not just ABA, that we withhold desirable things until the person speaks as demanded, is not something I agree with because it is based in a presumption that wanting something is equated with ability and this is incorrect, even if it obtains the desired result – a verbal utterance.

Until Emma began to write, using her letter board, I had a great many thoughts about her that have proven incorrect.  Until she began to express herself through those words she painstakingly spells out, I was not treating her as the exceedingly  competent human being that she is, even though I often thought I was.  Even now, on any given day, I do not do this as well as I’d like to.  All those years of ingrained thinking are extremely difficult to change.  But change I must…

A Renassaince Princess

A Renassaince Princess

Travel, Friendship and Sensory Overload

A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport.  Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that.  Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.

It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely.  But the wipers made a scraping noise that I found almost intolerable.  Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board.  It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter.  I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.

As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch.  It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry.  I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.

Ib began to very quietly and gently tell me what she was about to do, before she did it.  So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down.  Ibby was modeling, actively demonstrating what I need to do for my daughter.  She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.

As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person.  I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life.  Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person.  Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again.  However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.

As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight.  All the things I do without thinking, without questioning, things I take for granted.  But I also was aware that this relief is not what others, others like my daughter, necessarily experience.

The Trouble with Treating “Behaviors”

A child throws a chair or their shoes at school and the parents are told of their child’s “problematic behavior”.  A child pokes another child repeatedly and when told not to, laughs and does it again.  The teacher tells the child they will not be able to go out to the playground at recess as punishment.  A child runs from the classroom, causing the teacher to stop her lesson and pursue the child.  The child is given a time out for displaying “challenging behavior”.  A child does not respond to the teacher, does the opposite of what is asked and the parent is informed that their child is “out of control” or “refuses to listen” or “is being disruptive” or any number of other comments that so many parents routinely receive from the various teachers and schools that our kids attend.

Each time it is the child’s behavior that is highlighted, documented, and charted.  Reward systems are put into place, time outs are given, the child is told there are consequences to their actions and things they love are taken away to demonstrate this point.  The thinking goes that behaviors must be treated.  But I question all of this because I’ve read too many stories that beautifully explained these so called behaviors by many people who spent a great deal of their childhood being misunderstood and told their behaviors were “out of control” or “challenging” or they needed to understand there are consequences when they were responding to other things in their environment.

Imagine you are on the school bus and another kid is seated directly behind you.  They scratch the back of your seat with their fingernails.  The sound of their scratching, coupled with the vibration caused by it, makes you feel as though your entire body was covered in crawling ants and the vibration makes you feel physically ill.  You do not have much spoke language that you can easily access and the language you do have is thought of as echolalia so it is often ignored.  Never-the-less you do the only thing you know to do, you shout, “No!  Stop doing that.  You cannot hit, you cannot punch, you cannot bite!”

The other kid thinks this hilarious and realizing you are directing this at them, continues to scratch the back of your seat, except now they are doing it with renewed vigor.  The bus matron comes over and tells you to stop yelling, that you are being disruptive and need to be quiet.  The kid behind you continues to scratch your chair, and despite your protests, despite your attempts to make him stop, he will not.  Eventually you turn around and spit at the kid.  The matron comes over, now furious and tells you that you must apologize and that she intends to tell your parents how badly you’ve been behaving.  So you spit at her too.

When the matron tells you that you will not be allowed back on the bus, something you love riding, you begin to cry and bite yourself.  Again you are yelled at, told to stop it immediately….  When you get home your parents tell you this kind of behavior is unacceptable and on it goes.  No one says a word about the boy who was making your bus ride miserable.  No one talks about his behavior or that there are consequences, in fact there appear to be no consequences to some people’s behavior, only yours.  The message you learn is that terrible things will happen to you, seemingly without reason, without any explanation and that you must be hyper vigilant and avoid sitting near any other kids.  The next time you board the bus you attempt to sit in the very last seat, but are told you cannot and are seated in front of the boy who delights in scratching your seat.

(The above story happened to someone I know well and it was only when I was able to type with this person that the whole story came out.)

A few months ago I read about a boy whose older brother would punch his friends on the shoulder upon seeing them.  They all smiled and laughed.  After much observation, the younger brother decided that this was a good thing to do, especially to someone you liked and wanted to be friends with.  So the next day when recess rolled around this boy went up to another kid and punched him in the shoulder.  Only the kid didn’t laugh or playfully punch him back.  Instead he yelled at him to stop hitting him, called a teacher over and the other boy was sent to the principal’s office.  The boy was told if he continued “picking fights” he would be expelled.

These examples are but two of dozens about so called “behaviors” that are seen as problematic and in need of various interventions to deal with them.  And yet, when one listens and asks non-scolding questions from a place of curiosity without threat of admonishment there is almost always a reason for these so-called “behaviors” and the reasons may illuminate why the various interventions to treat them will not work, or will work to make the person learn to camouflage or quell their behaviors, but will not help the person learn how to cope or deal with the things causing the “behaviors”.  Treating actions that are seen as problematic as though they occur in a vacuum is like applying a band-aid on a rash caused by allergies.  The band-aid might cover the rash from view, but it will do nothing to treat the cause.

It is interesting to note that there are people who consistently work with those who are known as having “problematic or challenging behaviors” and yet, all of those so-called behaviors disappear when they are treated with respect, presumed competent and they are not treated as though their actions are intentionally disruptive.

Soma Mukhopadhyay and Emma ~ September, 2013

Soma & Em copy

Related articles:

The Conversation Continues…

The comments continue to pour in, both through email and on yesterday’s post and the post from the day before on the topic of violence and coping when overwhelmed and overloaded.  A number of parents have emailed that a behavioral program helped tremendously and a few wrote about various medications they’ve (almost always) reluctantly given their child as a “last resort”.  One parent wrote:  “I had to go to the ER because he broke my nose and when the doc saw the bruises on my arms and my broken finger they called social services.  I was told my child would be taken from me.  Another doc prescribed _____  (anti-psychotic drug) and told me it was the only shot I had at keeping my son with me.  Sometimes the choices we parents are given suck.  I never went back to the ER even after he broke two ribs and my toe.  Years later he was able to type that three kids were bullying him on the school bus and had been for years.

Has anyone had experience with being given a behavioral plan?  Did it help?  If it did, what was it exactly?   And if it didn’t, and you don’t mind sharing about it, what was your experience of it like?  Did anyone have drugs given to you as a child and what was your experience with that?   As always, I will not use whatever name you give unless you leave it in the comments section of this blog or give me explicit permission.

Feministaspie wrote:  “The adults around me would tell me to take deep breaths, count to ten etc, and while I knew they meant well (and frankly, that was a much better way for them to deal with me than some of the other things I’ve read online, so I’m lucky really), that sort of thing didn’t really work for me. This was because at the time, I’d basically go into fight-or-flight mode so I absolutely was not thinking about that at all. I think it might also be to do with taking things literally, because apparently I’d just scream the numbers 1 through 10 at whoever told me to count, which obviously didn’t help matters. In hindsight, perhaps a more detailed plan was needed as far as that was concerned!! This made me feel really frustrated because that sort of thing was supposed to help and it didn’t and I felt like it was completely hopeless.

Ashmire wrote:  “I’d also add that sometimes there is kind of a feeling of powerlessness, of knowing that no matter how bad I hurt someone I don’t/didn’t have the capacity to hurt them as much as they are hurting me, because they are hurting me with emotions and I can only use physical damage which just doesn’t, can’t, ever, inflict as much pain as emotions can.

bjforshaw wrote:  “As for what helps, I would say that being given space is paramount. Confronting the violence feels like being cornered and makes it worse. What helps me is whatever makes me feel safe and unthreatened. I’m not able to speak or even type (I hate to think what effect my pounding would have on my keyboard) but as long as I’m not pressured I will be able to talk about it after I calm down. It has to be in my own time, on my own terms. That’s when I can start to explore the causes, the triggers.

In his blog post, Violence as a Means of Expression, bjforshaw writes: “Why do I do it? That’s a very important question. I am usually able to communicate effectively but emotion is a minefield: I have alexithymia which means I have great difficulty identifying and describing my emotional states. Strong emotions, especially negative ones, are very stressful. Add to that the fact that I become practically non-verbal when under stress — words are in my mind but I can’t get them to come out of my mouth — and you have a recipe for disaster. I’m not able to communicate my state of mind or my immediate needs which adds to the sense of frustration.

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


Sleepovers, Siblings and Autism

I have to begin by pointing out our redesigned, upgraded and improved site!  (If you could see me I look like Carol Merrill in front of door #1 on Let’s Make a Deal.  I’m waving my arm up and down, pausing at all the new, awesome features, while smiling invitingly.  Okay, totally dating myself on that one.)

A few months ago my cousin, Peter and his wife invited Emma’s older brother, Nic to come to their home for a “sleepover.”  On the designated and much anticipated afternoon, Nic and I took the subway uptown to their home.  I got Nic settled and discussed when we should come to retrieve him.   It was decided that we would all come the following morning for a breakfast of pancakes and then be on our way.  (My cousin is actually close to my mother’s age, yet I feel particularly close to him and his wife.)

When I returned home Emma had just returned from a full day of activities.  We had told Emma that Nic would be spending the night with “cousin Peter and Susan” several days before and she seemed to take it all in stride.  The next morning as planned we went to pick up Nic, ate a lovely breakfast that Susan had prepared for us, and left, thanking them profusely.

Yesterday, now at least a month later if not more, Emma announced, “Go sleep over at Susan and Peter’s house.”

Thinking she meant that she wanted Nic to go there again and that she had so enjoyed our night with Richard and me all to herself, I said, “Oh!  You want Nicky to go back to Peter and Susan’s house?”

“Yeah!”  she said, nodding her head vigorously.  Then she came closer to me and said, “Go with Nicky?”

“You want to go with Nicky to Peter and Susan’s house?”

“No.  Just Emma.”

Confused, I said, “You want to go to Peter and Susan’s by yourself?”

“Yes.”  She looked at me expectantly.  “Spend the night at Susan and Peter’s!  Nicky stay home.”

It was one of those moments when you feel overjoyed, but also filled with sadness.  How could I tell her this was unlikely to happen?  How could I explain that Peter and Susan might not invite her?  How could I explain that this was not something I could ask them to do?  As my mind whirled around trying to figure out how to respond, Emma began to cry.

“Go to Peter and Susan’s house.  Sleep at Susan and Peter’s house.  Tonight.”

The longer I remained silent the more she upped the ante.  I glanced over at Richard with a look of desperation.  A look that said – how are we going to deal with this?

Richard explained that tonight we were going to have dinner and then go up on the roof.  We brought out a calendar and ticked off the upcoming activities we had planned.  We tried to explain to her that we couldn’t invite ourselves over to people’s homes.  (This was way to complicated and too much information.)  And the whole time I kept thinking how do we explain?  How do we say this simply?  As she became more fixated on the idea, she began repeating it over and over again in between tears.  Everything we said, “Not tonight, Em.”  or “Maybe over the summer,”  did little to satisfy her.

Eventually I brushed her and did joint compressions.  She seemed calmed by this and we talked about pressure and how she prefers firm long strokes, not light strokes.  We both did some breathing exercises together and the fixation on going to her cousin’s house seemed to dissipate.  Later Richard put on music for her and we danced.

After I had put Emma to bed and read stories to her, I said to Richard, “You know there’s a really positive side to this.  She’s showing her desire for independence.  It’s pretty amazing.”  We discussed how this represented so many terrific leaps forward for Emma.  She is eager for more independence, is cognizant of Nic having sleepovers, and wants to have that experience too.

It’s all good.  (Where did that expression originate, by the way?!)  But it is.  It’s all good.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

For my latest Huffington Post:  HuffPo

Pain, Air Pressure and Autism

Emma woke up in the middle of the night crying.  Her screams of pain, the result of intense pressure in her ears, were like the sounds of an animal under attack.  Last night, having read about the intense sensory issues many people on the spectrum must continually cope with, an intensity we neuro-typicals have difficulty understanding, I felt that I finally understood.  I “got it” in a way that I hadn’t until now.

For years Emma has, periodically, complained about her ears.  When she does we rush her off to various doctors and specialists, only to be told that there is “nothing wrong.”  But those words are being said by neuro-typical doctors and specialists and to a neuro-typical there is, indeed, nothing “wrong.”  But Emma is not neuro-typical, what appears fine to us, does not feel fine to Emma.  She is particularly sensitive to the changing air pressure.  She feels unbearable pain in her ears.  We cannot predict when this will happen, though I suspect the pain she experiences is exacerbated when she spends a great deal of time in the pool swimming, as she did these last few weeks while in Colorado.  Emma loves swimming.  She particularly loves jumping off the diving board and swimming under water.  I could be wrong, of course, but my guess is, the pressure is worsened with those activities.

Last night by the time I’d woken up and gone to her, Richard had already calmed her down.  When she saw me she came to me and wrapped her arms around me, her cheeks still damp from her tears.  She preempted me by saying,  “Ah, baby.  I know, I know.  Your ears are hurting.”  Her voice sounded almost exactly like my own.  She was using the words I use.  She was saying those words with the same tone I say them.

I held her for a few seconds before following her into the bedroom.  I urged Richard, bleary and exhausted to go back to bed, while I sat with Emma.  “Have to go see nurse Mommy,” Emma said, stroking my arm.  “Go aaaaahhhhhh!” Emma made a pretend cry.  “Mommy come!  Mommy come.  I need help!  AAAAAHHHHH!”  Emma continued in a soft voice, reenacting what had happened just moments before.  “Daddy says – you have to blow your nose. Oh, I know, I know it hurts.”  Emma nodded her head up and down.  “Mommy’s here!  It’s nurse Mommy!”  Then she lay her head on my lap, pulled her blanket up around her shoulders and began sucking her thumb.  As I sat with her in the dim light of her bedroom, her head in my lap, stroking her hair I wondered what must it be like to feel a sudden shock of pain caused by something you cannot see or stop.  No matter how much you cry out for help, it isn’t lessened.  I tried to imagine, what that must be like.  How frightening that must be.  How upsetting to be the only one feeling it.  How disorienting.  As I sat there I became aware of the air pressure.  I could feel the pressure in my own ears, not painful, but uncomfortable, building the more I concentrated.  And I found myself wondering what would it be like if I felt this all the time?  How distracting it must be.  What if I felt this, but much more intensely?  What if I felt this pressure, but the pain was excruciating?  How terrifying, while hoping that someone could remove what was causing the pain.

Only we can’t.

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book