Tag Archives: Cure

Cures, Fear, Freedom and Some Advice ~ By Emma

Posted on February 19, 2015 by | 26 comments

Freedom, Fear And Questions concerning Autism

Barking in the terrible terror that comes with being something so feared and hated.
Daring tremendous love for those who fear.
Healing tears for those who are in brutish pain.
Freedom from hurtful words about cures for being a part of the human race.

Help me so I can communicate.
Give me an education so I can learn.
Treat me as you want others to treat you.
Cheer me on.
Remind me of all I am capable of and focus on what hinders you, but don’t hurt me because I do not experience this world as you do.

We can learn from each other, but learning requires an open and willing mind.  Too many have given us fear instead of hope.

Which, when, why, who, where – we ask.

We matter.
We are all capable of being kinder, more compassionate, more loving to others and ourselves.

*A word from Ariane – Emma became very upset while writing this and began banging the table with her fists and then bit herself.  When I asked if she was able to continue, she typed, “No.  No more.  No more.” – I asked her if she was okay with me adding this here.  She typed, “yes.”

Emma ~ 2015

Emma ~ 2015

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Posted in autistic, life, Parenting

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Transformations

Posted on May 22, 2014 by | 24 comments

I began this blog in April, 2010 as a document of what I thought would surely be our finding a cure for my daughter’s autistic neurology.  At the time I did not question that this was a worthy goal and one I should be pursuing.  At the time, all I could see were the things challenging her, making her life more difficult with no upside.  She was, I thought, the victim of a neurology that caused her nothing but pain and suffering.  It was not until I was confronted with the joys, things that I had witnessed right from the beginning of her life, but, after receiving her diagnosis then ignored and dismissed, that I began to appreciate the more complex truth about autism and what that might mean to her.  I could not have imagined that four years later my daughter would be posting her profound insights about life, her neurology and the impact society has on her, not because we found a cure, but because we didn’t.

For those of you who have read this blog from the beginning, or poked around and read a post or two from those early days or those who’ve looked through the archives of the pieces published on Huffington Post, you will see a transformation.  It is not a transformation of my daughter’s neurology as was once my goal, but a transformation of our thinking, and as a result the impact our thinking has had, not just on her self-esteem, but on our ideas about ourselves, individually and as a family.  We had to examine and question our own neurology and the challenges we face as a result, before we were able to fully appreciate hers.

We do not take credit for who she is becoming.  We cannot.  My daughter is strong, stronger and wiser than I have any right to claim influence on.  While it has certainly helped that we no longer fight against her neurology, but instead encourage, support and provide her with the help she needs to flourish, it would be wrong to suggest who she is and is becoming is all due to us.  Had we not found people who believed completely in her, people who saw beneath the words she spoke, the way her body moved, had they not shown us and encouraged us to question our beliefs and set them aside, to look beyond what we thought we were seeing and what that meant, we would still be lost in the horror of what we once thought and were told “autism” meant.

This concept, that of helping an Autistic child flourish to be all they autistically can be, is counter to all that we non autistics are told and urged to believe.  So much of the focus is on making our Autistic children behave and appear less autistic-like.  Appearing non autistic is the emphasis and the fact that this comes at a price, is not often spoken of or even considered among the non autistic population.  Many people see Autistic people, witness their inability to say what they feel and think, and believe there is nothing more to see.  They come to conclusions, having witnessed the person’s movement, their facial expressions or lack of, and believe what they see and what they then conclude is the “truth”.  Assumptions can create all kinds of misunderstandings that hurt a population who do not follow the unspoken rules of a majority.

(Trigger for abuse contained in links)  Misunderstandings that then lead to abuse.  Beliefs, like this and this are expressed and taken by many as fact, regardless of how misinformed, regardless of how shoddy the reporting, which further harm people and children, like my daughter.  The cure I seek now is for our society.  A cure for intolerance, sameness at any cost, and for those who seek to silence those who cannot speak with spoken language, but who have a great deal to say through the words they write, is what I dream of.

One of the many down sides of non autistic neurology is how we struggle mightily to blend in, to fit in at all and any cost.   We strive to be better than, to keep up appearances, to cover our awful feelings of insecurity and discomfort with pretense and by controlling those around us.  Some become obsessed with money and power and yet once they have both, they use it to further separate themselves.  Where and what is the cure for that?

This is the journey I now find myself on.  There are others farther ahead, I am doing my best to follow.  There are many who learned all of this sooner than I did.  There are some who will read this and because they have been on this road longer, will see how far I still have to go, but this is a trek, the best sort of trek, filled with discovery and beauty.  Emma is leading the way now.  I really am just trying my best to keep up, while remaining open to all that I still do not know, but am eager to learn.

 

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Posted in Autism, communication, Parenting

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“Love Not Fear”

Posted on February 13, 2014 by | 11 comments

“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.”  ~  Emma on the topic of the three stem cell treatments we did in 2010

Fear.

This post had to begin with Emma’s words.

I’ve written enough to fill a book on fear and where that took us.  Stem cell treatments, spending all night on the internet searching for the next great “miracle” cure, taking my child from one specialist and doctor to the next, this is where fear took me.  I’ve deleted a great many posts where I express my tortured fear, but if you go to the first post, the post that began this blog almost four years ago, you will see in excruciatingly slow detail where fear took me.  Fear caused by those “alarming statistics” used ad nauseam by organizations like Autism Speaks, drives many like me to go to incredible lengths to “help” our child.  Blinded by abject fear we pursue things that can cause our children real harm, both physical and emotional.   The toll our fear can take on our children cannot be overstated.

I abhor Autism Speaks.  As the single largest organization claiming to know what autism is and is not, and worse, suggesting they “speak” for autism and those who are Autistic, Autism Speaks does more damage to my Autistic child than any other.  They have done a brilliant job marketing fear.  For transparency’s sake they should rename their organization ~ Fear Autism.  Donations pour in, large companies lulled into believing they are “helping” give their support.  Autism Speaks uses so much of their vast resources to hurt my child and Autistic people with that fear; what little good they accomplish in other areas in no way can counter the long-lasting and devastating damage they have done and continue to do to families who live in the kind of fear we once did.

I’ve written a great deal about fear on this blog, such as this post where I wrote about what I once believed:

“What did the future hold for my daughter?  How was she going to get through life?  How would we be able to keep her safe?  How would she fend for herself?  Would she be able to fend for herself?  Who would take care of her once we were gone?  Fear.  Fear.  Fear and more fear.  And then, without even realizing it, I would find myself furious.  Enraged.  And my rage found the perfect target.  Autism.  Autism was what I was furious with.  Autism was what the problem was, so it stood to reason that if I could remove it, all would be well.  So this is what I set out to do.  Except that my daughter happened to be Autistic.  But if I didn’t say it that way I could continue to separate the two.  I could continue to tell myself I was fighting the autism and not her.  I could continue to believe that my anger with autism would not affect her.”

And this post where I wrote:

“When my daughter was diagnosed with autism, my fear of  institutions was the one fear, outstripped by any other, that brought me to my knees.  For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died.  It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments.  For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal.  It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world.  Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.”

Richard and I live a very different life than we did just three years ago and it is all because we stopped being afraid.  If you think, even for a second that we stopped finding ways to support our daughter, encourage her, cheer her on to be all she can be, then I encourage you to read the last six months of this blog. These last six months, specifically, show how Emma has increasingly taken over this blog, just as I once did not dare dream possible.  It is her voice that sings out, every day a bit louder, every day more powerfully, every day…

A few more posts on Fear:

The Impact of Fearing Autism
Where Fear Leads Us
How My Fears Drove Me to Pursue a Cure
Murder, Fear and Hope

Love Not Fear.  Tomorrow is the Love not Fear Flashblog.

For submissions email:  info@boycottautismspeaks.com

Love. Just a whole lot of LOVE! Emma's Halloween Costume ~ The Love Monster

Love. Just a whole lot of LOVE! Emma’s Halloween Costume ~ The Love Monster

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Posted in Autism, fear, love

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The Quest

Posted on August 19, 2013 by | 4 comments

The quest for various potions and remedies kept the mother  separate from her child, though she did not know this at the time.  The mother believed it a valiant quest, and prided herself in her vigilance and determination.  She would single-handedly conquer what had thus far proven unconquerable to vast numbers of scientists, neurologists, neuropharmacologists, researchers and all those who had devoted their lives to finding a cure for autism.  She would save her daughter and she would prevail.  Call it arrogance, a lack of humility or simply being unable to understand; she would reflect on her own near miss with death as justification for her belief in her ability to do what no one else to date had.  (And yes, she began to forget that her sobriety and abstinence were not due to will power or because she tried harder, but was because of the help she received from a larger group/ a power greater than herself.)  All thoughts of something being more powerful than herself were temporarily forgotten, or put on hold, or, depending on the day, justified as being part of what she was trying to do.  As I said before, she was veering from the path laid out for her by thousands of addicts who had years of sobriety and abstinence and practiced humility, honesty, openness, willingness and acceptance as the basic tenets of their ability to stay clean one day at a time.

“Courage to change the things I can…”  she would often repeat this to herself during particularly tough times, neither saying the first part, “Grant me the serenity to accept the things I cannot change,” nor the last, “and wisdom to know the difference.”  She believed herself to be courageous.  She knew herself to be courageous.  And she had learned over the years how to tap into her innate kindness, to foster it, encourage it and nurture it, though in her quest for a cure she felt increasingly out of touch with all that and began to struggle mightily with what it meant to take “the next right action”  or know what it meant to know any will other than her own.

Whether there is a G-O-D piece to all this is not something I can speak of, nor can she, as this is a word that never brought solace, so in the midst of all of this she abandoned even saying the word and stopped trying to make sense of what it may or may not mean.  She did, however, believe in something larger than herself, a power whose meaning shifted over the years and eventually evolved to mean – kindness, love, appreciation, gratitude – these were the things she knew to do and act upon when feelings began to feel factual, when feelings served to confuse her and make her believe them, despite what was happening and what she was witnessing.  Acts of kindness were the mainstay of her “practice” for no other reason than she knew her life was better when practicing kindness than when she did not.

So it was not a leap for her to believe that finding a cure for all that ailed her daughter was an act of kindness.   It’s important that I interject here that to this girl who had grown into a woman, had spent more than two decades of her life being an addict, found abstinence and sobriety through another way of being in this world, became a mother to two beautiful children, a “cure” meant removing all those things that caused her daughter pain.  A cure meant that her daughter would be able to carry on a conversation, the way non-autistic children do, that she would not have GI issues, she would not have sensitivities to texture and noise and pain, but that she would be relieved of all of that.  She told herself these were all things her daughter would want to have removed and be “cured” of if only she could tell her.  The mother believed this wholeheartedly and comforted herself that she was doing the right thing.  The only thing.  The best thing.  Not for a moment did she think of a “cure” as an eradication of her child, but more a version of her child.  A kind of fantasy, similar to believing in Santa Claus, of who her child would be if she were relieved of all or most of her physical pain and had the ability to get along in society and this world with ease.

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Posted in Addiction, Autism, Parenting

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Muddying the Water: Alleviating Pain ≠ “Recovery”

Posted on June 18, 2013 by | 37 comments

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

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Posted in Alternative Therapies, Autism, Parenting, sensory issues

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Parental Bullying and Autism

Posted on October 1, 2012 by | 78 comments

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

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Posted in Autism, Bullying, Parenting

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The Path Leading Away From Hell – Continued

Posted on April 25, 2012 by | 8 comments

Yesterday when I began writing The Path Leading Away From Hell I knew halfway in, I wouldn’t have time to finish, but I plowed along anyway and at a certain point had to stop.  To pick up where I left off  – until recently finding a “cure” to my mind, was synonymous with helping Emma overcome all the things that caused her such pain and misery.  “Curing” her meant finding a way to help her read and write, figuring out how to help her with her GI issues, helping her with language and speech so that she might have an easier time making friends, helping her with her vast and varied sensory issues, helping her tolerate change, finding alternate ways for her to cope when she was overwhelmed so that she would not bite herself and punch herself in the face, helping her stay engaged and focused so that she might progress academically, helping her be in the world so that she might one day have the opportunity to live independently should she want to, surrounded by people she loved and who loved her.  I was intent on finding ways to help give her the tools she would need to travel if she wanted to, find a job and career she found interesting and close friends so that she might never feel alone.  These were/are my goals for Emma, and the word “cure” seemed to sum up all of these points, succinctly, in one compact word.

When I began reading blogs written by adult autists who objected vehemently to the word, “cure,” I was surprised.  At first I didn’t understand and reasoned that they objected because they were functioning at a much higher level than Emma is and does.  They spoke and articulated what they thought.  Emma cannot do any of that.  I felt sure that if they were unable to make their opinions and feelings known, they too would seek a “cure.”  But then I read some posts by autists who were not able to live independently, who had tremendous difficulty keeping a job, who found social situations impossible, yet they too objected to the use of the word “cure.”

I knew I was missing something, so I kept reading.  I wanted to understand.  I have always wanted to understand.  After days spent reading blogs and comments, many of which I’ve listed in past posts and some that are featured on the blogroll on this site,  I came upon an autistic woman who described two general types of parents, the first who wanted their autistic child to function as best they could and would do everything in their power to help them accomplish this and the second was a parent who wanted to cure their child of their autism so that they might have a “normal” child instead.  It was in reading her description that I began to understand, this wasn’t an argument about “cures” in the way I had understood and interpreted that word to mean regarding Emma, this was about the potency of words and how they can be used to dehumanize, discriminate and hurt.

No one was saying – Don’t help your child.  On the contrary, almost every single autist who wrote on the subject, spoke of the many challenges they faced and of the help they often required.  The argument was not about debating the merits or worthiness of who needed help, this was not a debate about needs, challenges, being non-verbal or verbal, being independent or dependent, the number that accompanied ones IQ or where on the autism spectrum one was.  What most of the autists I read objected to, was the use of the word “cure” because it implied who they fundamentally are, needed to be excised.

Many spoke of the shame they felt growing up, the alienation, and punishment they endured because of how they were perceived.  Almost everyone mentioned being bullied, being abused, being subjected to insults, derision and criticism.  All because they were autistic.  Add to that the various erroneous theories regarding autism and how autists lack empathy, do not feel as neuro-typicals do and you can begin to see how destructive this type of thinking is.  Dehumanizing and marginalization are the ways of war.  It is how people have justified acts of violence against others throughout history.  Dehumanizing autists with talk of “cures” and theories regarding how they do not feel are ways in which people can rationalize abuse.

It is human nature to want to be understood, to be listened to, and to connect with others.  But first there must be a conversation, a dialogue in which we all participate, in which each person is listened to and given the chance to voice their opinion.  Who knows, we may learn all sorts of things.

I certainly have.

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’
To read my most recent Huffington Post, click ‘here.’

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Posted in Autism, Autism Acceptance, Parenting

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