Tag Archives: recovery

The Seduction of “Recovery”

Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of “recovery.” There were a multitude of different diets, the gluten-free/casein free diet and the GAPS diet, that some said had “recovered” their child, making them indistinguishable from their peers.  There were the bio-med treatments ranging from daily B-12 shots, hyperbaric chambers, ointments applied topically, vitamin supplements, chelation, homeopathic and naturopathic remedies to stem cell treatments.  There were the therapies that made up the center piece of books claiming full recovery and the many doctors and specialists who supported them.

In the beginning we were terrified.  I still remember that feeling.  The nights of not being able to sleep, staring at the ceiling and worrying only to finally slip into a semi-conscious state of fitful sleep.  The next morning, there were often those first 60 seconds upon waking when I’d forget the worries that had kept me up. Then reality would come rushing back and it was like being thrown into a bottomless pit of worry, stress and terror.   The fear was relentless and was fueled by just about everyone we came into contact with.  Our child was far too young to have predictions made about her future, and yet people made them and all of them except those stories of “recovery” threw me into further fear.

People compared her neurology to cancer or Parkinson’s and likened the various therapies and treatments to chemo; a necessary horror that no one enjoyed, but that must be done.   And I believed them.  I had to save my child.  I would do anything to save my child.  Various things were deemed more acceptable than others, but dig deep enough and you can find any number of people, doctors and specialists who swear by whatever it is they believe will transform a child who does not speak, who seems so frustrated and unhappy into a speaking child who is no longer in pain.  Had this not been the case, had they not claimed complete “recovery” we would not have subjected our child to any of it, but instead, we tried all of them.

So much of what we were told seemed to coincide with what we were seeing.  My daughter could not use spoken language to speak.  She seemed to be in almost constant internal discomfort.  She cried, gut wrenching screams of pain, regularly.  Her sleep was erratic, her behavior confounding, her distress with things I couldn’t understand seemed constant, her inability to communicate what was going on made it all the more confusing.  So many of the professionals we took our daughter to seemed convinced that their treatment or remedy or whatever it was would be the thing that changed everything.  I desperately wanted her to not be in pain.  I desperately wanted her to be able to communicate.  I wanted nothing more than to ease her frustration.  For years I never thought – perhaps everyone is thinking about all of this wrong.

So on one hand we were introduced to autism as a horrible thing, but that there were people and things that could “treat” it and if we were lucky she could “recover” and on the other hand we were told no one knew what caused it and there was no cure. It is this, seemingly two opposing thoughts, that many parents are introduced to.  It is no wonder so many choose to believe the former and not the later, even when, in doing so, we head into a labyrinth from which there is no end.  The third idea, that this is a different type of neurology and to compare Autistic neurology with non autistic neurology is detrimental to all involved and to suggest that one neurology can be trained to become a different one is not only an unachievable goal, but an unworthy one, was not introduced to us until much later.

There is nothing quite so awful as to see your child through the lens of those who are seeing nothing but deficiencies, challenges and problems.  Assumptions are made about intelligence based on tests used for a different neurology.   I often wonder what we would have done had we been introduced to Autistic people who didn’t use spoken language, but who typed to communicate.  Would we have been so frantic?  I don’t know.  What I do know is that rethinking everything we once believed, refusing to submit to the idea that autism is the source of all that is wrong, seeing how non autistic neurology has its own set of deficits and challenges, and finding a way for our daughter to communicate has changed everything.  If we spent even a small percentage of the money currently being spent on autism and autism research, on finding better ways to support our non-speaking kids so that they too could communicate using stencil boards, letter boards and typing keyboards, at least some of the panic many parents feel would subside.



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 


Parental Bullying and Autism

I have kept the specific blog, post and commenter who I refer to in this piece anonymous because my point is not about any particular person, but about a larger issue.  But first, a little background…   I was alerted to some negative comments left on a friend’s blog.  She had written a post about learning to accept her Autistic child.  It was a beautifully written, honest and loving post detailing what things had helped her find her way to acceptance and how that journey had changed her and her relationship to her child.  The path she describes was similar to my own, except mine took much longer and was more circuitous, but I could completely relate to her process.  It was my journey, only on speed.

I went to the blog to read the comments and read this:  “”You accepted autism, I fought it.”  I stopped breathing.  I felt as though someone had taken a 2 X 4 and rammed me in the solar plexus.  I became aware of the fluttering in my stomach with the simultaneous sensation of dizziness in my head, starting just behind my eyes and then a prickly feeling at the back of my skull.  I could feel my heart pounding.  I swallowed.  I read on.  The words are no longer important.  She  related how she had “recovered” her child as though it were scientific fact and then said that her thinking would one day be common knowledge and any other view would be considered “archaic.”

I had to stop reading.  I stood up.  I left the room, walked around, drank some water and came back.  I could feel tears welling up.  I swallowed again.  I was aware that my hands trembled as I read “Seems to me a thinking person would keep an open mind and once you accept autism…there is no more thinking that occurs…just the acceptance.”  I couldn’t work out what that meant as there was no logic that I could get a firm handle on, but the feeling those words evoked was one of failure and shame.  I had to make a conscious effort to take a deep breath.  I felt the sting of her words, like a knife cutting me open.  I sat there and read the other comments and another from her, reiterating her stance, her position.  Her story, no longer a personal tale, but one given forth as though evidence in a court of law.  And her love shining through it all, triumphant, jeering, condemning.  Her actions and the outcome of her actions worn like a medal of honor, the purple heart of parenting, pinned to her chest, evidence of her supremacy.

I could no longer hold back my tears.  My tears, physical expressions of my inadequacies.  As I cried, as the tears ran down my cheeks, dripping off my chin on to my shirt, I closed my eyes and felt all those feelings of pain, of sadness, of shame that had nothing to do with autism, but are feelings I carry around, despite how hard I try to get beyond them, feelings I have had my entire adult life, long before I became a mother.  Those feelings of not being good enough, not being worthy, not being pulled together, not having all the answers.  Those feelings of being “less than” all of them came bubbling to the surface.  Those biting words from that commenter cut through the fragile dam I so carefully constructed for myself.

“You accepted… I fought…”

I am better than you.  My love is stronger, better… I love my child more than you do.

This is bullying.  Words used to personally attack or intimidate another person.  It makes us think we are not as good as someone else.  For me, her words took me back to all those years when I believed all those parents who spoke with assurance, with superiority, without doubt about something that could not be proven or even replicated, stories that are not based in any science, but are “one offs”.  All those false hopes I had and mistook for the real thing.  False promises that lead me down a path of tremendous pain, ultimately harming my daughter far more than helping her.  The biggest strides I’ve made that have positively impacted my daughter are when I was able to completely accept every aspect of Emma and put down the whip beating me to change her neurology.   This is not to say we do not do everything in our power to help her learn, teach her to care for herself and try to give her tools she can use to flourish.

Richard said to me the other day, “Parents are spending all this time and energy trying to teach their kids to be normal, when they should be teaching their kids how to be themselves.”

My husband is brilliant.

Emma – September, 2012