Tag Archives: hypo sensitive

Muddying the Water: Alleviating Pain ≠ “Recovery”

A few months ago I wrote about how, once we were given an autism diagnosis for our daughter, so many of the things we believed were uniquely and wonderfully “Emma”, were suddenly thought to be examples of her “autism”.  Things were either categorized as a deficit or a “splinter skill”.  Splinter Skills and Other Words We Use concentrated on talents, interests and abilities.  My friend, Chavisory reminded me yesterday of the physical issues often mistakenly believed to be part of autism.  Things like allergies, insomnia, GI problems, epilepsy and food and eating challenges that often people who are Autistic have, but that many in the general population also experience.

Chavisory mentioned in her comment, a NYTimes article about a drug trial thought to minimize social withdrawal in Autistic people and those with Fragile X.  She wrote, “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” Chavisory’s point is an important one.  This distinction is critical.  Not only because researchers are often trying to treat something that is actually something else, but because it confuses caregivers into believing they can “cure their child of autism”.

When a non autistic person has food allergies or insomnia, we say they have food allergies or insomnia. When an Autistic person has a food allergy or insomnia, many believe it to be yet another aspect of their autism.  People talk about “co-morbid” diagnoses of an Autistic person as though it were all folded into the autism diagnosis.  The problem with all of this is, it muddies the waters and makes people misunderstand what autism is and isn’t.  And it opens the door for many to believe they are curing their child of autism.  Taking care of allergies, GI issues and insomnia will not make an Autistic person non Autistic, however it will make them feel a lot better.

When an Autistic person with food allergies or debilitating insomnia, who also has hyper sensitivities to texture, taste, smell and sound, is given melatonin to help them sleep or a diet that complements their specific constitution, it stands to reason they will exhibit behavior that reflects that.  When anyone, who is in extreme pain and exhausted is helped to have that pain and exhaustion alleviated, they will feel better.  They will be able to smile perhaps, focus, be more alert, even engage in conversation, with an ease they would not exhibit when overwhelmed with pain and exhaustion.  But when this person happens to be Autistic, people use language suggesting their “autism” has been reduced; words like “recovery” and “cure” creep into the conversation.

Suddenly people become convinced that every Autistic person has food allergies, GI issues and sleep disorders and therefore ALL should do x, y or z.    If that doesn’t work, instead of questioning the underlying issue (that perhaps this person does not have an allergy or insomnia)  many will up the ante by doing more radical “treatments” to treat an allergy or condition that the person actually does NOT have.   Logic falls away.  Common sense is rejected.  The pursuit of a perceived “problem” that may have never existed is discounted as not the problem.   The answer is to pour more money into finding the thing that will remove the “autism” even though autism is not what is causing the pain and discomfort.  Special doctors and “autism specialists” are brought in to advise and treat.

When we start throwing all kinds of things at an “autism” diagnosis, when a massive array of physical and emotional things get added, when temperament, interests, preferences, talents become embedded in the “autism” diagnosis we are causing far more confusion and problems to an already confusing diagnosis.  And people misunderstand and say they’ve “recovered” their child or their child has been “cured” instead of recognizing that what’s really happened is they found something that helped their Autistic child, who had allergies or insomnia feel better.  Meanwhile thousands more, who pursue similar ‘treatments’ with no benefit to their child, conclude they need to find a better doctor, or treatment, or diet instead of acknowledging their child doesn’t have an allergy.

Em listening to an opera rehearsal over the weekend 

*Emma

The Gift of a Molar

Like many Autistics, Emma has a multitude of sensory issues.  I’ve written before about Emma’s amazing ability to tolerate certain types of pain, particularly when it comes to her teeth.  The idea that she was suppose to present us with her still bloodied tooth in exchange for money from some unknown and dubious entity called the tooth fairy was a concept Emma found unpersuasive.  Go ‘here‘ for more on Emma’s teeth and our attempts to explain the tooth fairy.

Blisters on her feet are another example of Emma’s high pain level.   As a toddler I remember taking off her shoes, having spent the day running around and playing in various parks, only to see both of her feet had opened blisters rubbed raw so much so that her shoes were stained with her blood.  This was before we had a diagnosis and I can still remember sitting on the carpet in our hallway, her bloodied foot in my hand and thinking, how is this even possible?  Why wouldn’t she have cried?  That the pain must have been intense and unbearable seemed a given.  How she spent the entire day not noticing or worse, noticing, but not saying anything, was something I could not fathom.

Yet it seemed that the opposite was also true.  If Emma’s ears hurt from the changing air pressure, she cannot tolerate the pain and will cry out in agony.   The one thing I know without any doubt, is that my understanding of pain is very different from hers.  What I find mildly irritating can be the source of tremendous pain for Emma and things that would cause me to grumble and grouse to anyone within shouting distance are, for Emma, met with no comment.

This morning at 5:30AM Emma appeared in our bedroom.  She leaned over as I opened my eyes and placed something slightly wet and cold in my hand.  Then she stood upright and beamed at me, waiting expectantly.  “What is it, Em?  What did you give me?” I asked managing to pull myself into a sitting position.

Emma said nothing, she just stood there smiling.  I turned on the light and saw in my hand a shiny metal capped tooth.  “Oh Em!  It’s your molar!”

This was the molar that Emma had to be hospitalized, anesthetized and kept for six hours before she finally regained consciousness to have capped as she could not tolerate having the cavity filled in the conventional way.  This was the tooth that upon waking, Emma cried and tried to pry the metal cap off with her fingers while screaming, “Take it off!  Take it off!”  This was the tooth that whenever she smiled, the light would reflect off of it, a glistening reminder of the pain she had had to endure.

“Pulled it out!”  Emma confirmed, grinning proudly.

I know I shouldn’t have, but I decided to let her stay with us in our bed, even though it was far too early, even though we’ve been working hard at having her go back into her bedroom until it’s 6:30AM, even though by letting her stay with us, I knew I was undoing weeks of work.  But I couldn’t send her away.  She was so proud of herself and I knew that tooth, that tooth I felt a particular aversion for as it represented untold pain for Emma, had been barely loose just a day ago.  How she managed to wrench it from her mouth is something I am unable to truly understand.

I meant to take a photograph of it, but forgot in the rush to get ready this morning.  It sits, next to the other molar she yanked out of her mouth just last week, on my bedside table.  These are the only two teeth Emma’s ever given me.  New York City is littered with Emma’s baby teeth, carelessly tossed wherever she happened to be when she extracted them from her gums.  These two molars are little gifts, just in time for Mother’s Day, that I intend to find a special container for.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.