Tag Archives: ABA

Another Way to Silence – Shame

Shame has a long and twisted history.   Over the centuries it has been used to coerce, to convert, to make people compliant, to keep people in line.  I’m not sure there is a “healthy” aspect to feeling shame, though I may be in the minority here as this article states, “Embarrassment and shame are important in the regulation of social behavior. Both emotions tend to occur when rules have been violated.”  But what if those “rules” are not actually in place for the good of ALL?  What if those societal “rules” serve the majority, but actually are a disservice to a minority?

The argument that without shame we would all resort to violent, unethical and amoral behavior is one I don’t agree with.  Plenty of people behave badly who are filled with shame, often as a direct result of the burden of shame they live with, but usually those who feel tremendous shame hurt themselves more often.  I question how often shame, actually motivates us to respond in positive and constructive ways.  In most cases, it seems to me, shame is less a controller of bad behavior and more an instigator of self-betrayal and self harm.

Shame is what people feel who have been on the receiving end of violence, violations, betrayal and abuse.  Numerous studies have linked shame with depression, suicidal ideation, post-traumatic stress, rape and incest.  The very people who could actually use a little shame appear to be without, while those they victimize carry the vast portion of it.  In these cases, shame is the emotional equivalent to metal restraints, intended to keep people in check, compliant and silent, particularly when used on children or a group of people who are already in the minority.

Many of the methods used, with supposedly great success, on Autistic children, has created a population of adults who feel tremendous shame, lack self-esteem, feel inferior, have anxiety, live with ongoing debilitating stress, all of which exacerbates the very “behaviors” these therapies attempted to remove.   The unending destructive cycle shame creates, does nothing positive for anyone, least of all our children.

I believe shame keeps us from flourishing.  It causes us to doubt, to become hyper aware, self-critical of our desires, our urges, our instincts.  Shame makes us feel incapable, unable, frozen and of little value.  From my perspective, shame is far more damaging than it is “healthy”.  Shame is exactly what I do not want my children feeling.  Ever.  In fact, shame is a warning sign that something has been taught improperly.  If either of my children exhibit shame about something, it is a signal that more needs to be discussed.

I do not want my children behaving in a certain way because they feel shame if they don’t.  I want my children behaving in a kind and loving manner towards themselves and others because they have learned it feels good to do so, because they have come to see that self-seeking, hurting others, gossip, betrayal and acts motivated by resentment and vindictiveness lead to more harm and like-minded behavior. All behavior is infectious.  All behaviors, good or bad can provoke others to do the same.  I am not naïve enough to believe it’s a given, but I do know that I like myself far more when I am kind and being of service than when I’m not.

I hope my children are learning the antithesis of shame and silent compliance, which is a strong sense of self-worth.  I want them to know now, while they are still so young, the beauty and joy of a healthy sense of self, that wonderful feeling of liking who they are as human beings, that feeling we are born with, but that over time can be taken from us.  I want my children to be in touch with those wonderful feelings of curiosity, awe and joy, so that when they make mistakes they aren’t destroyed by them, overwhelmed with shame and become silent.  I want to bolster them up, reassure them, encourage them, support them, so one day, they will be able to give hope and encouragement to someone else who may desperately need it.

Emma – three years old – 2005 

2005

Tackling That Troublesome Issue of ABA and Ethics

I’ve never devoted a post to ABA (Applied Behavioral Analysis), because I have strong opinions about it and become easily upset by the topic.  In addition I am well aware that others also have strong feelings about ABA, only they believe it was the one methodology that actually helped their child.  However, not one to shy away from controversy, I’m going to go ahead and talk about it because I think it’s important to discuss ALL topics related to Autism, particularly the ‘hot button’ topics.  The only thing I ask is that if you disagree with me, please let’s all try to keep our words respectful.  Here goes…

One of the best arguments against ABA is Michelle Dawson’s article, The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA industry.  If you google Applied Behavioral Analysis you will see glowing reports of its efficacy for more than 30 pages.  I actually stopped at the 30th page only because I didn’t have time to continue.  The first book I read on the subject of Autism was Catherine Maurice’s Let Me Hear Your Voice which details how ABA saved two of her children’s lives from Autism.  (I use this language as it is the language employed by the author.)  Catherine Maurice also likens Autism to cancer and ABA as the necessary chemotherapy.  The whole acceptance model obviously is not employed when thinking in these terms, how could it be?  And perhaps this is the single greatest problem when discussing ABA.   Ethics is not a word one associates with chemotherapy.  Why would it be?  The person considering chemotherapy is doing so because to not do so is to face the very real possibility of death.  When the language around autism becomes synonymous with cancer, one is saying to be Autistic is to have a death sentence.  And while that may seem like hyperbole to many parents and Autistics, it is not so far from the truth when we were informed of our daughter’s autism.

When Emma, then two years old, was given her diagnosis we were told, if we employed 40 hours of ABA a week she would undoubtedly be mainstreamed by Kindergarten.  This was what we were told.  This is what we hoped for.  This is what we chose to believe.  We were also told that a bio-medical approach when coupled with ABA was ideal and so we did that too.  We fought and received 40 hours of ABA a week, took Emma to a homeopath, who through more than a dozen tinctures, did a homeopathic version of chelation (i.e. removed heavy metals from her system).  I also took Emma to a cranial sacral doctor as well as had her on a gluten-free casein free diet.  Despite all of this, when she did not show the sort of monumental leaps promised, the ABA therapists said it was because we were at fault.  Never once did any of the therapists, supervisor or agency waver in their firm belief that ABA was a solid, “scientifically” backed methodology.  It was spoken of as fact.  We were the only variable.  We then did what they advised, we put Emma in an ABA based preschool, continued our own ABA training so we could continue doing it at home, hired an ABA trained therapist to help us implement ABA in the evenings and weekends and again were reassured that she would be mainstreamed by the time she was in Kindergarten.   We didn’t have any alternatives as far as preschools went, so I ignored my gut, my maternal instincts, warning me that this was NOT a method I would ever allow used on my neurotypical son and yet, was allowing to have implemented for my autistic daughter.

After a year, not only had Emma not progressed as the school had hoped, but she was actually regressing and was, what the principal informed us, a “red flag”.  The teacher, obviously aggravated with Emma’s lack of progress even suggested that this was Emma’s fault, that she was “refusing” to comply and expressed her irritation with us.  Emma, at the time was just FOUR years old.  Looking back on those first few years is surreal.  A four year old was being blamed and words like “manipulative” and “misbehaving” were used.  I’m going to interrupt this story to acknowledge, this is one story.  One family’s experience and is an anecdotal tale.  In no way do I believe for a moment that because ABA did not produce the results so many believed it would that our story is somehow scientific fact.  What I will say though is that ABA is, in my opinion, a flawed, at best, methodology and one that we do not, would not ever consider using with our NT son.  Therefore an important question must be asked – Why is that?

Why do we not use ABA for the neurotypical population?  This is where the ethical question must be considered.  This is where the “science” behind the use of ABA begins to fray.  If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems.   ABA can only really work if we view autism as a deficit and something that must be removed.  Only Autism is a complex neurological difference that cannot be removed.  I do not believe for a moment that there will ever be a “cure” for Autism.  It was explained to me by a neurologist that Autism is a web of neural pathways branching off and fusing producing new neural pathways, so random, so complex making it impossible to single out any one pathway allowing for a simple removal to produce a neurotypical person.

I don’t believe anyone would argue against helping an Autistic person cope with the challenges they face, but the larger question is how do we do that?  Restraining someone who needs to concentrate by flapping is not the answer.  Insisting children sit quietly so that they can “attend” and be “table ready” when flapping or twirling a piece of string actually helps them listen and concentrate does not make any logical sense.  Insisting that the neurotypical way of communicating is the ONLY way to communicate is limiting and unhelpful to those who cannot express themselves as a neurotypical does.  Viewing Autism as a list of deficits that can be corrected through a series of discrete trials will not make an autistic person any less autistic.  Teaching Autistic people how to ‘pass’ so they can blend in better with neurotypicals is similar to the belief that a closeted gay person will live a happier and more fulfilled life by being closeted than someone who is “out”.

I don’t agree with the basic tenets of ABA because it is a methodology based in looking at those it treats as deficient and less than.  This is not a model I believe will help Autistics or any of us in the long run.  We, who are neurotypical or more neurotypical than not, are in a position of power, we are the majority, we are the ones making the rules.  That does not mean the rules we make are correct or even right.  I believe in looking at ABA we must examine what our objective is.  Is the objective to make someone blend in better and if so we must ask ourselves why?  Before ABA is considered, ask yourself, is this a treatment you would employ for your neurotypical child?  What message are we sending our Autistic children?  What will this message do to their self-image?  What message will be internalized, a message they will carry with them well into adulthood?  Will this message serve them, make them feel good about themselves, help them lead happy, fulfilled lives.  After all isn’t that what ALL parents want for our children?

Emma as mermaid!

Overwhelmed

Overwhelmed.  That’s how I’m feeling at the moment, with no real right to be.  Nothing has happened, Emma continues to make nice strides, yet even as I say that, a little voice is muttering, “Really?  Is she really making strides or are you just grasping at straws to make yourself feel better?”

Sometimes I just want to rant and whine and complain, yet as I write this, I know that’s not really what I want.  Okay, maybe a little. But it’s more the feeling of wanting to turn the volume down in my head.  If they had a worry lobotomy I think I’d sign up.  Or maybe that’s what a lobotomy is.  I just don’t want all that other nasty stuff that comes with a full lobotomy, just take the worries away, thank you very much.  What I really want is to not feel this way.

When Emma was diagnosed and still two-years old I remember after a long training session in which Richard and I were supposed to continue with her ABA program after the seventh or eighth therapist left our home for the evening, I thought – I don’t want to be my daughter’s therapist.  I want to be her mother.  Being her mother doesn’t seem to rate high on the importance scale of most of these methodologies.  A few years later when Richard and I went down to Bethesda and trained with the late Stanley Greenspan in his DIR/floortime, I felt the same way.  After Stanley advised us that we should each be doing seven or eight 20 minute floortime sessions with her a day, I thought – I don’t want to run interference, constantly launching questions at her to encourage language like rounds fired from a .44 magnum.  (Yeah, I just googled that, because I’m completely insane AND a stickler for accuracy in the similes I use.)

The point is – if I’m being perfectly honest – I’m feeling a little lazy at the moment.  But laziness with an autistic child is really not something I can afford to be.  I mean her life is hanging in the balance while I’m whinging about how I don’t want to take the time to map out her next study session.  (Don’t you love it when people use words such as “if I’m being perfectly honest,” and “frankly” and “truthfully” or my personal favorite, “if truth be told” ?  To preface a comment with “Truthfully” implies that one is NOT usually truthful, which, for some reason, strikes me as hysterically funny.  Okay.  I’ve had my moment..)

I know that feeling of overwhelm is like fear, or worry or any number of other emotions that do nothing positive, in fact serve only to keep me deeply embedded in the stagnating cycle of fear and worry, like air that’s being recycled through a dirty filter.  (Stop with the similes!  This should be said in a high pitched Monty Pythonish voice.  But I can’t help myself!)  I know the only way to break out of this is to do the thing I keep putting off doing.

Just do it.

I know.  I know.

I think I’ll go make a list.

It will be a very long list.

I hate long lists.

Ugh.

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.

The Path Leading Away From Hell

In the last few months, Richard and I have been hit with a surge of information, ideas, alternate ways of thinking that have completely upended our goals for Emma and our thinking regarding autism.  (In the best possible way.) I have written about these shifts in past posts – The Evolution of  a Perception and A Different World, prior to that Waging War where I was still straddling the fence but was getting close to seeing Emma and autism in a new and, I believe, improved way.

A few things have occurred to me in recent weeks, please read this as it is meant, which is as a description of the process, a process I am grateful for.  Some of the words I use are often misunderstood, they have been by me, this is the beginning of that process.  Tomorrow I’ll try to finish this post, but for now this is the beginning…

There were a number of factors that increased my terror at the word “autism” beyond the grim way in which the diagnosis was delivered, the less than hopeful and helpful “advice” given to us.  There were a couple of things I read or was told that have remained etched in my mind.  Such as the pediatrician who advised me to – “Get on with your life.  There’s nothing you can do,” was equally as destructive as reading Catherine Maurice’s book, Let Me Hear Your Voice about how her two children on the spectrum lost their diagnosis with an aggressive ABA program.  That book was the first of many “recovery” books I consumed like a starving person confronted with an all-you-can-eat-buffet.

Whether it was a diet, the vast number of biomedical interventions we tried, behavioral therapies, 40 hours of ABA, 10 twenty minute sessions of DIR/Floortime every day…  you name it, we tried it.  Pursuing these interventions was akin to hitting my head against a brick wall over and over and over again.  In fact, nothing seemed to make much of a difference, and it was that fact that continued to propel us down the “searching for recovery” road for as long as it did.  Because nothing we did seemed to cause any long term continuous progress, in fact at certain points during her ABA program Emma actually regressed, we started looking for more and more radical “alternatives.” Until finally I remember feeling, exhausted, utterly exhausted, physically, emotionally, spiritually, it was as though I’d come to the end of a grueling trek and faced yet another mountain range, there was no breathtaking view from atop some majestic peak, just more of the same and I just couldn’t do it any more.  I was spent.  We had just returned from a third trip to Central America for stem cell treatments, saw very little change and weighed the risks (which were enormous and like a flashing red question mark in neon lights) we said to each other, how much longer can we do this and at what cost?

It was at this point that we found a literacy program that proved to be the one thing that really helped Emma beyond anything we had tried thus far.  At the same time that we embarked on Dr. Marion Blank‘s program, I continued to hold out hope that some sort of biomedical intervention would help her as well.

This past fall like a burst, one final spark of frantic energy I took Emma to a Naturopath who’d been recommended to me, and put Emma on one more radical “diet” not GAPS, but damn close, pulled the few things that she loved to eat from her diet, saw her lose so much weight it frightened me as she refused to eat anything, and after six weeks of hell, said, enough.  We put everything back into her diet, saw no change at all, and then felt all the guilt that accompanies these failed interventions all over again.  I just couldn’t believe I’d put her through that yet again, (the first time was when she was first diagnosed and two years old.)  All those “suggestions,” the well meaning advice, the referrals to the “miracle” doctors who were recovering kids left, right and center, it was a pandora’s box I just kept going to and opening over and over and over again.  You’d think someone with intelligence (I like to think of myself as that hypothetical someone) would have said, if this guy is such a genius why isn’t he on the cover of Time Magazine, why is it that no one has actually heard of this person, this intervention, this whatever it was?  But I didn’t.  I kept trying different things.  The allure, the seduction of finding the “thing,” the miracle was so great, all rational thinking was suspended again and again.  Add to that – desperation, which actually doesn’t describe what I felt, I was beyond desperation.  I was beyond crazed.  I was on a mission from some other universe.  Nothing was going to stop me from “fighting” for my child. I was determined; I was going to find the thing that would “cure” my daughter.

And after all of that, I didn’t.
And after all of that, it turns out, I couldn’t.
And somewhere deep, deep down, I felt I’d failed her.  To stop trying to find a cure that would remove what plagued her, what caused her to not be able to articulate what she was thinking, was to give up on her.  To stop the search was like leaving her to a future of wordless, silent dependence.  Institutionalization, upon Richard and my death, was her future.  Of that I felt certain.  Who would take care of her?  Who would help her?  Who would hold her when she was sad?  Who would be there to sing and dance with her?  Who would even allow her to listen to the music that seems to feed her soul?  Who?
We are fortunate in that Emma’s long time therapist, Joe and his wife, had agreed that for as long as they were alive they would take care of her  should something happen to us, but that did little to quell my fears.  What about when they both died?  I asked myself.  What about then?
To be continued….
To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’
To read my most recent Huffington Post, click ‘here.’

Grappling With The Right Thing To Do

When Emma was first diagnosed she was still two years old.  The supervising ABA (applied behavior analysis) therapist from the agency who provided us with Emma’s early intervention program was a huge imposing man with a beard.  During one of her more difficult sessions, he took Emma into her bedroom where he told me he needed to have me not intervene as it would only make matters worse.  I was told that she needed to learn she must comply or she would never be able to progress.  I was told that no matter what, I was not to enter her bedroom.

As her screams grew louder and more desperate I huddled in the hallway against the wall to her bedroom, confused, horrified and angry and wept.  It was a form of torture, listening to her screams.  As the minutes wore on I wavered between the instinctive need to protect my daughter and the desire to do what would prove best for her.  The problem was, it was not clear what the right thing to do was.  If I went in and rescued her, according to the therapist, I would jeopardize all the hard work they had up to that point accomplished, reinforcing the idea that screaming would get her out of doing any “work” and if I didn’t intervene I had to sit with the knowledge that I had allowed a complete stranger to traumatize my daughter.  These are the kinds of episodes we parents replay in our minds, with new ones constantly being added to the queue.  Did I do the right thing?  Should I have stopped him?  What sort of long term trauma did I subject my daughter to?  If I didn’t stop him, if I allowed these sorts of sessions to continue was I not an accomplice in harming my daughter?  Was the therapist correct?  Would the rigorous ABA program we fought so hard to implement have worked had I not doubted it so much?

As it was, I did not intervene that day.  However, months later during yet another session when Emma cried and screamed with the therapist, while sequestered in her bedroom, I finally did.  I was told by the therapist that it was my behavior that was causing Emma to not progress with her ABA program.  I was told in no uncertain terms that the therapist (whom I liked) could no longer work with Emma because I wasn’t sufficiently supportive.  Later that day I received a call from the head of the agency telling me they would no longer provide services for Emma because I was too difficult to work with.  The year was 2005 and in New York City there were few other options.  ABA therapy was considered the gold standard, the only scientifically “proven” methodology that worked with children on the spectrum.  We had fought hard to obtain 35 hours a week of it for Emma.

The point is, whatever the methodology you employ with your child, there is no way to know whether it will help.  Uncertainty is part of parenting.  With a child on the spectrum that feeling of uncertainty is heightened and more loaded, the stakes feel so much higher.  Are we doing the right thing?  Will this help her in the long run?  What will do the least amount of “damage” and help her the most?  We neuro-typicals cannot know what it is to be autistic.  We cannot speak for people on the spectrum.  All we can do is hope that the decisions we make are going to help our children so that they can one day speak for themselves.

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

From a Mom in Melbourne

The following is a comment from the “Redefining Autism” post written by an Australian mom with two children on the spectrum.

“It is what our education department in Victoria does.  They make it so hard for children to qualify under their own made up criteria for what they will actually fund as being autism.  One of those being a severe language delay.  Problem solved, then they just don’t count all the students with an actual diagnosis of autism only those they will fund at school.  They also don’t count the children in my region ( my own 2 included ) who have severe autism, but attend schools for the intellectually disabled.  If you attend such a school you are funded as intellectually disabled and not autistic and so they do not count you in their figures as autistic, never mind where we live, unlike the rest of the City, there are no autism specific schools beyond the age of 9.  Such schools are zoned, so even if we could travel there we wouldn’t be accepted as the schools are so full.  If you can’t survive in a mainstream school with minimal support you wind up in a special school for the intellectually disabled or homeschooled.

We just had a review of autism education provisions for our region, which I was involved in instigating and the Education Department again only released the figures of those students who recieve funding for autism.  It is wicked, given that this region of Melbourne has the highest incidence of autism, but we will never know just how frighteningly high because they only count some students not all those with a medical diagnosis.  One local politician described it as a tsunami.

I read the article you mentioned a few days ago and it is just more of the same.  There is an epidemic – I can see it.  My husband has work mates who have children with ASD, we have friends we knew before they had kids who now also have children with autism, we have a neighbourhood full of kids with ASD, wherever I go – restaurants, swimming pools, shopping, the library – I see children who are obviously autistic.  They can call it what they want, but it isn’t going away.”

Emma was diagnosed with PDD-NOS  (Pervasive Developmental Disorder – Not Otherwise Specified) at the age of two years and nine months.   Given the new criteria proposed, Emma would not have been eligible for the services she was given, which included speech therapy, occupational therapy and Applied Behavioral Analysis (ABA) as well as Verbal Behavior  (VB).  While I take issue with the standard form of early intervention – ABA & VB – as it did not help Emma, we were able to find an early intervention therapist versed in Stanley Greenspan’s DIR (Developmental, Individual-difference, Relationship-based) model, which was at least a bit more helpful.  I have no idea whether Dr. Marion Blank’s program for children would have been covered had we known about it, but it might have been.  Had we begun Emma on Dr. Blank’s program when she was first diagnosed, we would undoubtedly have a child who was now mainstreamed, saving the state and ourselves an enormous amount of money, not to mention heartache, stress and emotional trauma (hers, as well as ours).  I say this with confidence because now, at the age of ten, Emma has made more progress in the past year that we have been working with Dr. Blank than she has in six or even seven years put together.

My distress is two-fold regarding this new proposed criteria and the ongoing discussion regarding autism.  The first is that shifting numbers will not change the fact that the rate of autism has far outpaced our ability as a society to cope with it, and secondly, the standard way of treating autism – ABA and VB being the gold standard, needs to be reanalyzed with better and more stringent studies.  There are a great many children whom ABA/VB have not helped who can be helped with other methodologies.

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

The Diet

It’s been a month.  Last Monday I wrote that it had been four weeks and two days, I was wrong.  It just felt like it had been a month.

One month ago, on October 16th we began Emma on a GF/(modified) CF/ soy free and a great many other free diet.  This is our second go around with this diet.  The GFCF diet was the first thing I did when Emma was still two years old, to no noticeable change.  However, that first time she began eating a great deal of soy – soy yogurt being her favorite.  I was working with a DAN doctor at the time who tested her for hundreds of foods but never said anything about all the soy she was eating.  So after three months we took her off the diet and again saw no change.  This time I’m working with a naturepath/physician who also tested her for hundreds of foods.  This time, the list of foods to avoid was much longer than the first: cocoa, corn, potatoes, chicken egg whites, all red skinned fruits and vegetables, bananas, peanuts, onions and garlic.   Emma did not test negatively for wheat, but he advised we take her off it anyway, just to be safe.  Oddly, she also didn’t test negatively for sheep and goat’s milk, so we’ve allowed her to have sheep’s milk cheese, sheep’s milk yogurt and duck eggs.

Still we have witnessed very little change in Emma.  We’ve grown used to this.

I keep thinking I’m going to find something, something that other families have tried with significant results, but so far, other than Emma’s literacy program, we have not.  It’s frustrating to try various things and see little, if any, change.  As I’ve written before, we think we are seeing an increase in physical affection, but it’s hard to say this with certainty.  We have definitely not seen a profound change of any kind causing us to feel without a doubt that this diet has done anything.  Still I will give it more time.

Why some of these interventions work for some children and not others is something that’s been debated for awhile.  Why is it some children are mainstreamed after a few years of intensive 40 hour a week ABA, yet for children like Emma, they were not helped?  How is it that some children go on a GFCF diet and within days are transformed from a screaming, frustrated, incoherent child to one who is speaking in full sentences, playing with toys in an “appropriate” manner and displaying a never before seen curiosity of those around them?

It is easy to blame oneself, but I don’t believe that is the answer.  I know of too many cases where the parent has tried a great many things only to find their child did not respond.  I wonder whether it is the children who do respond, who are the exception.  While this thought depresses me, I have to wonder whether it isn’t more accurate.

For more on Emma’s journey through a childhood of autism, go to – www.Emma’s Hope Book.com

From Joe (Emma’s Therapist for the Past Five Years)

Joe, Emma’s therapist, who came to us five months after we received her diagnosis, was initially trained in ABA (Applied Behavioral Analysis).  As Emma regressed using ABA, Joe was the first to agree with us that we should find another methodology which might work better.  When we found Stanley Greenspan (who died April 27th, 2010 – next post will be a tribute to him) Joe was an eager participant in learning how to do Stanley Greenspan’s DIR (developmental, individual-difference, relationship-based) therapy with Emma.  Joe has since become the “Zen Master” of DIR.  He is brilliant at it and watching him work with Emma is a profound experience.  The following is a post by Joe.

“I was watching ABC’s Nightline last night, which aired a story about a pro-surfer who has autism. Watching his intensified focus on the waves certainly reminded me of Emma’s physical grace and all of her athletic talents – skiing in particular. They described the teenaged surfer as someone who’s “mastered the seas but still struggles on land.” On the water he feels relaxed, but on land he must face the pressure and anxiety of social interactions. Like Emma, the surfer has no physical indication of any disorder so his inability to respond appropriately to social interactions (or simply say hello) is often interpreted as rudeness. This is one of the dozens of catch 22’s of autism – wanting her to be seen and treated just like anyone else but also expecting others to be understanding/non-discriminatory once they find out she’s autistic.

The surfer’s story ended by crediting his autism for opening this door for his talents to shine: a door which may have otherwise remained shut.  While Emma’s autism has come with its vast array of difficulties and challenges, it has also opened similar doors for her talents to shine. While I feel many of Emma’s abilities are innate, I believe a stage needed to be set in order for them to be unveiled. So I end this story by crediting Emma’s parents, Ariane and Richard, for all of their endless efforts to open every door and set every stage possible for her. As for her athletic talents, giving her the opportunity to swing herself at 18 months, getting her into gymnastics at 2 years old, and strapping her into skis at 3 years old is just a fraction of all of the sensory input she was constantly provided with at such an early age. While Emma continues to shine in the spotlight, I credit her director and choreographer, Ariane and Richard, for making it happen.”

The Beginning (Cont’d)

Some of the books I read:

Let Me Hear Your Voice: A Family’s Triumph over Autism by Catherine Maurice

*Nobody, Nowhere by Donna Williams

*Emergence:  Labeled Autistic by Temple Grandin

*A Slant of Sun: One Child’s Courage by Beth Kephart

*An Anthropologist on Mars by Oliver Sacks

Maverick Mind by Cheri Florance

A Parent’s Guide to Autism: Answers to the Most Common Questions by Charles A. Hart

The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders by Bryna Siegel

Handbook of autism and Pervasive Developmental Disorders by Donald J. Cohen & Anne M. Donnellan, ed.

Biological Treatments for Autism and PDD by William Shaw, Bernard Rimland, Pamela Scott, Karyn Seroussi, Lisa Lewis & Bruce Semon

Special Diets for Special Kids by Lisa Lewis

*Sensory Integration and the Child by Jean Ayres

Teach Me Language: A language manual for children with autism, Asperger’s syndrome and related developmental disorders by Sabrina K. Freeman, Lorelei Dake & Isaac Tamir, illustrator

*Engaging Autism by Stanley Greenspan

*The Child with Special Needs by Stanley Greenspan

*Denotes books that were very helpful and continue to be

When I wasn’t reading books on autism and canvassing the internet reading the endless array of therapies being offered, each with it’s own little morsel of hope attached -  perhaps this will be the thing that she responds to – I was scheduling Emma’s early intervention therapists.  There were often 7 therapists in a single day, coming and going.

I look back on that period and wonder what it must have been like for Emma.  How odd it must have seemed to her, but she took it all in stride.  There were a few exceptions, the days when I would sit outside her bedroom door during her therapy, leaning my head against the wall listening to her scream as she tried to leave the room, but the therapist would patiently tell her she could not until they had finished and I would cry, fighting the urge to let her out – all that separated us was the four inch wall of her bedroom.  I remember feeling that everything I thought I knew as a mother – all my maternal instincts were useless in the face of autism.