Tag Archives: Applied behavior analysis

Demanding Speech

Posted on March 24, 2014 by | 33 comments

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

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Posted in ABA, Autism, Parenting

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Separation Anxiety

Posted on March 21, 2014 by | 57 comments

In our ongoing “spring cleaning” (which never seems to end) I came upon a large spiral notebook filled with notes from the dozen or so ABA therapists who came to our home beginning in November, 2004 through August, 2005.  Emma was just two years old when all of this began.  It’s a fascinating document of that time period and it depresses me to no end.  Over and over the notations remark upon Emma’s “clingy-ness to Mom”, her “whimpering” and “despondency” when I would leave the room and her internal discomfort.

It is impossible for me to read the notes and not see an obvious pattern.  For a therapy that prides itself in collecting data, it is curious that this larger and, what seemed to me anyway, obvious pattern was largely ignored or, perhaps it is what naturally happens when we pathologize a neurology.  Emma’s desire to seek comfort and assurance from me, her mom, was seen as a negative, something to be trained away, something that was getting in the way of more important things.  It is ironic that this was being said about a young child who was diagnosed with autism, which has, according to all those experts, as one of its most defining characteristics, “social impairment” and an inability to form close bonds.

A two-year old not wanting to go off with a stranger is considered a “good” thing by most people.  That this same child would prefer being with their mother, even after getting to know someone else, would still, in most instances, be thought of as an excellent example of bonding and having a close relationship with one of the most important people in that person’s life – their mother.  After all, if you cannot trust your mother to protect you, to be there for you when you are two, how will you learn to trust anyone later in life?

Richard and I talk about “what we would have done” all the time.  Not as in – what would we have done if we could do it all over again – as much as, what would we do now if we had a two-year old today who was just like Emma.  And the first thing, the absolute first thing would have been PRESUME COMPETENCE.  That is the key, the foundation by which everything else would have been gauged.  This does not mean expecting a two-year old to understand, know and behave as a twenty year old.  It means we would have presumed she understood and felt what a two-year old is capable of understanding and feeling not less.

When Emma began her ABA based preschool in the fall of 2005, I was told to drop her off and immediately leave.  Yet when my non autistic son went to preschool they had a three-week “transition period’ in place where parents routinely stayed with their child, slowly reducing the time they stayed until eventually the child separated from their parent when they felt comfortable to do so.  Each child was different.  Some children ran off within the first few days, others needed more time, some needed several weeks, but no one said, “Leave now, even though your child is hysterically crying and clinging to your leg, it will be good for them.”  I remember asking about this at Emma’s preschool and being told they didn’t allow parents to stay with their child as this only prolonged the child’s suffering.  How is it that one method is good for one child, but not another?

Knowing how sensitive my daughter is and was, knowing how intensely painful this must have been for her, I can only sit here, filled with sadness that we just didn’t know better.  It was as though, when we got her diagnosis, all common sense left us.

So I am asking all my Autistic friends – What would have helped you when you were a small child?  Would it have been helpful to have your parent stay with you until you were comfortable and felt safe enough to go off on your own?  Would you have liked knowing your parent was there, even if you didn’t need to be right next to them?  What do you advise parents new to all of this?

OT session ~ 2005

OT session ~ 2005

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Posted in Autism, diagnosis, Parenting

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Controversy and Commenting

Posted on November 6, 2013 by | 67 comments

Yesterday I quoted Ido Kedar, whose book, Ido in Autismland is his account of what it’s like for him as a non-speaking, Autistic, teenager.  The quotes I used were specifically about his experience with ABA, the acronym for Applied Behavior Analysis.  (Ido also has a blog of the same name.)   A couple of people accused me of “falsehoods” and spreading “inaccurate information”.  One person wrote, “I have never read so falsehoods in one post in my life.  You clearly have zero understanding of ABA or the methods used in its approach.”  Except that the bulk of the post he was objecting to was made up of quotations from Ido’s book about his experiences as an autistic person.

I asked for clarification and was told, “Falsehoods being projected do not need to come as a quote from you directly. This is your blog and you are the one responsible for providing accurate information. If you are going to show a quote from a student, then maybe you should also factor in that the particular therapist the student had was not a very skilled one or a qualified one at that.”  Except to make such a claim that “this particular therapist was not skilled or qualified” would be inaccurate and something I cannot possibly know as I’ve never met the therapist being referred to.  Evidently telling a lie is acceptable if it’s done so in favor of another’s opinion, however quoting someone’s firsthand experience is reason to be accused of creating falsehoods.

Another commenter wrote, ” The posts regarding ABA on this blog are grossly inaccurate. Unfortunately, the author of this post (and subsequent commentary) are so misinformed on the topic that they are not able to recognize exactly how inaccurate the information is. For those of us who understand the field, this can certainly be frustrating.”  Except that so many being referred to and who were commenting are Autistic.  In fact a couple of those who commented yesterday are teachers and work directly with Autistic children, one is a professor and teaches disability studies to special education educators at the university level.  These are a few of the people this commenter believes to be “misinformed” and even went so far as to scold, “I urge you to become better informed on the topic.”  It would have been comical had it not been so upsetting to read the condescending tone and level of rage this one post and comments inspired.

I’d like to clarify a few things…  Let’s take ABA out of this, I do not care what the “therapy” is being called, if it is not respectful of the person it is meant to help, if it uses dehumanizing techniques such as electric shock, restraints, isolation rooms, repetitive testing requiring the person to master an action before being allowed to move on, it is not a therapy I will ever support.  If a therapy is meant to teach compliance, teach someone whose neurology and sensory issues do not make sitting still simple or easy, who cannot listen, attend and make eye contact all at the same time, I question it’s objectives.  If a therapy is looking to “fix” another’s neurology, make that person “indistinguishable from their same age neurologically different peers” I will continue to speak out against it and will encourage others to do the same. If the therapy in question does not presume competence at its core and does not take into account the person’s specific neurology and sensory issues, it is flawed.  If these ideas are threatening to some, so be it.

So let’s stop talking about ABA specifically, because it seems to me the conversation continues to get derailed about what ABA is or isn’t, how some practice it or do not, how it has or has not evolved, instead, let’s discuss these other concepts.  And if you believe something that goes against what I’ve just said, fine, quote me in the comments section, tell me why you disagree, back up your ideas with examples, preferably with words from Autistic people and I will happily listen.  Accusing me of “falsehoods”, “inaccuracy”, being condescending, lashing out and making personal attacks are not comments I will allow through moderation.

Colin sent me this graphic, something I think we can all relate to…

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More On ABA

Posted on November 5, 2013 by | 160 comments

I finally did something I’ve never done before.  I’ve closed down any further comments on a post I wrote about the ethics of ABA.  I continue to get up to thirty views on that post daily, now over a year later.  Most of the comments are coming from ABA therapists who write in defense of ABA, which is fine, except most of them are saying the same thing and my response is also to repeat what I’ve said before, but I’m also getting comments from people who are furious that I dare suggest ABA is anything but wonderful, so instead of endlessly repeating myself, I have shut comments down, just on that post.

If you are an ABA therapist, it is your obligation to, at the very least, read what those who are autistic and were given ABA as children are saying about it.  If nothing else, please read Ido Kedar’s book Ido in Autismland where he describes what it was like to be a non-speaking autistic child, with a body that does not do as he would like, and who was given hours of ABA therapy every day for years.

Ido writes:

“It frustrates me to look back at how my ABA teachers drilled me endlessly in basic skills only to say it wasn’t mastered because I had inaccurate pointing.  I knew everything so easily.  I was bored to tears but my apraxic hands would go to the wrong card so they thought I didn’t know “book” or “tree”.  I did it over and over.  It was the worst.  The assumption that people don’t understand if they reply incorrectly is a huge misconception.  ABA is built on this erroneous premise.”

Again from Ido in Autismland:

“My ABA teachers would talk baby talk and tickle me to reward me.  I cared that they see me as smart, so I tried, but I think it was pointless.  I often felt that they couldn’t see my potential, just the drills.  I feel it’s time autistic people finally say what it’s like to be drilled in flashcards over and over when your hands don’t move to your thoughts, or to have your teacher say in front of you that you can’t count because your stupid hands refuse the right number you’ve counted in your head.  I remember standing miserable and embarrassed, holding the wrong number of straws and hearing my teacher say, “It’s clear he has no number sense,” as if I couldn’t understand or had no emotions either.  When I think of these frustrating experiences I am grateful I am not in that situation anymore.  But many of my friends still are.  That’s why I cry for them.”

Regarding eye contact, Ido writes:

“I can listen better if I don’t look at the person.  I can look, but it’s not pleasant.  In ABA I had to look in people’s eyes with a timer.  It was so torturous I did it, but with terrible anxiety.”

Anyone reading this, I hope will be asking themselves what the objective is to insist someone “look at my eyes”.  Would we prefer someone looks at us and pretends to listen to what we’re saying or that they listen?  If someone is not able to do both, is there any point in insisting they do so anyway?

Again in Ido in Autismland:

“In ABA supervision I had to do drills in front of a supervisor with all my teachers.  Then they’d talk about me in front of me to decide how to improve my performance.  It’s miserable to be an object of study especially because they never realized I understood what they were saying.  The consequence of testing me in front of people is that I grew embarrassed and ashamed inside.  By analyzing me in front of me, usually wrong, I grew resentful.  It was so frustrating I don’t like remembering it to tell it now. It’s over for me, thank God, but not for other kids so I have to share this to help them too.”

Rather than continue to quote Ido’s book, I urge you to read it.  This is one person’s experience, but it is also an experience that a great many have said they understand and had as well.  For those who believe in ABA’s benefits, I just ask that you consider Ido’s words, echoed by so many.  There is no “winning” this argument.  All of us have, I believe, similar goals, and that is to do what proves most helpful for our children.

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Non-Speaking With a Lot To Say

Posted on October 17, 2013 by | 44 comments

I am reading Ido in Autismland: Climbing out of Autism’s Prison by Ido Kedar.  This is another one of those MUST READ books.  Ido is a non-speaking Autistic teenager who learned to write his thoughts by pointing to a stencil board using Soma Mukhopadhyay‘s RPM method.  Ido now types on an iPad.  When I first received a copy of this book, I admit, I was put off by the subtitle.  You see, I was one of those people who once believed my daughter was trapped inside a prison that I called “autism” and for a long time I absolutely believed this.  This thinking led me to believe that if I could cure her, if I could remove her “autism” she would be released from its prison.  It was also this thinking that caused me to say how much I loved my daughter, but hated her autism.  Once I discovered blogs written by Autistic people I began to reassess these various beliefs and finally began to understand how my thinking was actually harming her.    I’ve written about some of this ‘here‘, ‘here‘ and ‘here‘.

But in reading Ido’s book and because I wrote directly to him and his mom about my initial reaction to the subtitle, I have come to understand that his reference to “prison” refers to being imprisoned in a body that does not obey what his mind wants, a mouth that does not say the words he wants to communicate and a society that perceives him as someone he is not.  But more importantly this is Ido’s story and is about the way he perceives autism as it relates to himself and what he has been through as a result. To not read this terrific book because of semantics or because Ido’s perception of autism as “illness” is one I found unhelpful and even harmful to my family and daughter, would mean I would have missed reading a great book written by a really insightful and wise young man who had to fight against prejudices and preconceived ideas about who and what he was capable of.  This is Ido’s story and what a wonderful story it is!

In the introduction, Tracy Kedar, Ido’s mother, writes,

“The ideas in this book challenge many assumptions long held by professionals working with autistic people.  In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today.  If we had continued to rely on  the specialists and educators who dominated Ido’s early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated and hopeless.  It is time for our understanding of autism to undergo yet another paradigm shift, and Ido, along with other non-verbal autistic communicators, is a pivotal guide.”

*The use of bold is mine, used for emphasis and is not in the book.

Just as a quick aside, Soma’s RPM method begins with written choices, progresses to a stencil board with the student pointing to the desired letters with a pencil, then to a laminated alphabet board and eventually to an iPad and computer.  Soma or the person doing RPM does not come into physical contact with the student and once the student has moved to a laminated board, she even encourages the student to hold the board themselves.  The final step is to move from the laminated board to independently typing on an iPad or computer.

This quote was written by Ido in 2008 regarding his body and mind and how the two do not obey each other.

“Time after time people assume that I don’t understand simple words when they see me move wrong.  Understanding is not the problem.  It’s that my body finds its own route when my mind can’t find it.”

Again in 2008, Ido writes about his life before he learned to communicate using RPM.

“They misinterpreted my behavior often.  For example, I remember that during my ABA supervisions, I sometimes ran to the window over the parking lot in an attempt to show them that I wanted to go to my car.  They didn’t understand how a non-verbal person might be communicating.  Once, when I got really mad I urinated in my seat, but the supervisor just thought I couldn’t hold my bladder.

“But even worse was that they didn’t support me when I began to communicate.  Maybe they assumed I was too dumb, or they simply couldn’t see what I had learned because I learned it in a different way than their methods.  The response to everything was to give me drills.  If I had a dollar for every time I had to touch my nose, I’d be rich. I remember one day they realized that I hated being told to touch my nose, so they brilliantly switched the command to “touch your head.”  I felt like a prisoner of these theories and methods…”

“On Being Silent and Liberated from Silence”

“Can you imagine silence your entire life?  This silence includes writing, gestures, and non-verbal communication, so it is a total silence.  This is what a non-verbal autistic person deals with, forever.  Your hopes dim, yet you persevere in going to ABA or Floortime (play focused treatment for autism) or speech therapy, all to no avail.  The therapists can’t help and you despair, and only you know that your mind is intact.  This is a kind of hell, I am certain.

“The experts focused on stim management, or drills of rote activities, or silly play like finding things in Play Doh, over and over, on and on.  But they never taught me communication.  I shouted to them in my heart, “I need to communicate!”  They never listened to my plea.  It was silent.

“I could read from an early age.  I could write too, only my fingers were too clumsy to show it.  In school I sat through ABC tapes over and over and added 1+2=3 over and over.  It was a nightmare…”

Ido writes how when he was seven years old his mother supported his hand in an effort to have him help write invitations to his birthday party and how she could feel he was attempting to move his hand and in this way realized he could write.  But things did not immediately change.  No one believed him or his mother.

“My ABA team tried to convince my mom that she was wrong.  This hurt me so much because I thought they’d be happy for me and teach me how to communicate better.”

My daughter has asked that I read Ido’s book to her, so I am.  It has opened up a whole discussion about communication, what it means to not be given the tools to do so, what is autism, what it means to be autistic, being in a body that often does not do as one would like and what others believe as a result of actions you often have little if any control over.

Ido

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Posted in Autism, Autism Books, communication

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Tackling That Troublesome Issue of ABA and Ethics

Posted on October 10, 2012 by | 211 comments

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.  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 non autistic 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 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 non autistic way of communicating is the ONLY way to communicate is limiting and unhelpful to those who cannot express themselves by speaking.  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 non autistics 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 inferior.  This is not a model I believe will help Autistics or any of us in the long run.  We, who are not autistic 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.  We must be willing to examine what our objective is in using ABA.  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?

*I urge any who are reading this to read what autistic people are saying about ABA.  Ido Kedar, a non speaking Autistic teenager has written a book, Ido in Autismland where he criticizes ABA and describes why.  Any of you who are ABA therapists, it is incumbent upon you to read his book.  He is one of a number of Autistic people who are speaking out about ABA.

Other posts dealing with ABA:

Non-Speaking With A Lot to Say
Trauma & Autism
ABA

Emma as mermaid!

Related articles

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Want to Know About Autism? Ask An Autistic

Posted on August 27, 2012 by | 49 comments

There’s a blog I love, written by E. called The Third Glance.   I found it last winter.  Written by a PHD student, E. describes her life, her passions, her studies, while detailing her thought process while socializing with friends during an afternoon at a café or memories of growing up with abusive parents who didn’t understand her.  E.’s compassion for humans and their neurological differences is striking as one considers the stigma she experienced growing up Autistic.  The Third Glance was one of the first blogs I found in my search for Autistic Adults.  E’s compassion and kindness shines through all her posts no matter the subject.  Her determination to give people the benefit of the doubt was something I was astonished by, particularly during those first few months of my discovering Autistic blogs and reading that so much of what I’d done was not as altruistic as I’d believed.

When Em was diagnosed, the words “Autistic adults” were not uttered.  Ever.  We heard about how imperative it was to immediately implement early intervention, we were shuttled off to get an “independent diagnosis,” we were advised to start investigating ABA therapy, we were inundated with ABA therapists, speech therapists, occupational therapists, a social worker came to our home once a week, team meetings were held regularly, we were trained to continue Emma’s ABA therapy after the last therapist had gone home.  We were advised to put Em on a gluten free/casein free diet, we were encouraged to read the thousands and thousands of pages of material thrust at us from a wide variety of well-meaning and well intended people.

In that first year of Em’s diagnosis, I was well versed in various theories regarding gut issues, lead levels, mercury levels, toxicity in our food and water, and I could reel off at least six different unpronounceable ingredients in vaccines.  I’d read at least 30 memoirs written by parents of Autistic children as well as books with titles such as A Parent’s Guide to Autism: Answers to the Most Common Questions, The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders, Handbook of autism and Pervasive Developmental Disorders and  Biological Treatments for Autism and PDD.  I’d taken Em to cranial sacral therapists, homeopaths, lead specialists, developmental pediatricians, nutritionists, allergists and a DAN (Defeat Autism Now) doctor.  I knew about ABA, VB, RDI, PECS and DIR therapies.  I read and reread Catherine Maurice’s Let Me Hear Your Voice with the same dogged, determination and devotion evangelicals read the bible.  I knew about sorghum flour, rice flour, garbanzo bean and fava bean flour.  I honed my cooking skills on perfecting a gluten-free/casein free birthday cake for Em’s third birthday with platters of tasty GFCF finger foods, which Emma refused to touch, let alone sample.

Autism, seemingly overnight, had become my focus.  I was set on fighting it.  I was engaged in nothing less than a war.  My weapons were my determination, my tenacity, my stubbornness and my love and devotion for my daughter.  Everything else came to a screeching halt.  Everything else fell into line behind my research.  I was on a quest.  To my way of thinking, I was on a mission to save my daughter’s life.

When my husband, understandably alarmed by the fervency with which I threw myself into my research, suggested I was spending too much time searching, I was furious.  I railed at him, enumerating all the things I was doing with the sole intent of saving our daughter.   I was furious that he seemed unable to fully understand the battle I was waging.  It never occurred to me there was another way.  It never dawned on me I was battling windmills.

That Autism was the enemy, something to be vanquished, defeated and destroyed, I did not question.  I didn’t have time to question, I was too busy dealing with the Board of Education, therapists, Doctor’s appointments, tracking down every “cure,” and baking foods my daughter wanted nothing to do with.  Every time I turned around someone was sending me a link to a new “cure” a new treatment, a new therapy, a new “miracle worker.”  Countless people would begin a conversation or email with, “Have you tried…”  “Have you heard of…” and I would grab a pen and begin taking notes.  Doggedly I pursued each and every tip.  Determined not to leave a single stone left unturned, my days and nights were filled.  I was busy.  There was no time for calm contemplation, there was no time to sit and consider the path I suddenly found myself.

The Seven Year War.

And then…  what happened?  What changed?  Everything.  I began to question the “truth” about autism.  I began to question the dogma.  I began to question the “facts.”  It was inevitable, I suppose when you read as much as I do.  But the single biggest change occurred because I found Autistic Adults like E.  I’ve written about this before, ‘here‘ (the post where E. first reached out to me in the comments section) and again ‘here.’  I won’t go on about that process, except to say this – there is something about the immediacy and the interactive quality of a blog that no book can replicate.  In addition, a blog written by someone who is Autistic is far more interesting to me than anything I’ve heard from researchers, specialists, therapists, teachers, doctors because Autistics are talking about their lives, it’s not a theory, there’s no speculation.

Want to know about Autism?  Ask Autistics.

Thank you E. for reaching out to me.  Thank you for generously holding out your hand to me in kindness and friendship.  Should all parents be so fortunate as I have been.

A quick aside, E. was also one of the creators of the Autism Positivity Flash Blog (see badge on right side of this blog) where a group of bloggers reached out to hundreds of us asking that we write a post in answer to the google search words “I wish I didn’t have Aspergers.”  If you haven’t gone to that blog, do.  It’s a veritable who’s who in Autism blogging by Autistics and parents coming together to support someone on the spectrum.

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Emma Riding Beau – 2005

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The Intense World Theory Of Autism And An Interview With The Markrams

Posted on August 16, 2012 by | 22 comments

At the ICare4Autism Conference, held in Jerusalem August 1st & 2nd, I had the opportunity to interview the neuroscientist team Henry and Kamila Markram who created The Intense World Theory for Autism.  Henry Markram is also director of Blue Brain, and is a coordinator on The Human Brain Project.  Both were at the conference presenting.  The Intense World Theory for Autism states autism is the result of a “super charged brain.”  Feelings, visual, auditory and tactile sensations are felt so intensely they are painful.  These intense feelings, coupled with extreme pain memory causes the child to become overwhelmed and shut down, withdrawing from stimulus.

I first read The Intense World Theory in March of this past year.  I was also just beginning to find blogs written by Autistics.   My world completely changed.  It was the first time I heard anyone working in the field of autism who did not speak of it as a deficit.  I remember reading every paper they’d written, making Richard read everything I was finding as well.  We stayed up every night for weeks discussing what this might mean, how it changed our view of our daughter, how it completely upended how we worked and communicated with her.  It was as close to a spiritual awakening as I’ve ever had.  I felt as though everything I thought I knew about Emma opened up and I was introduced to a vibrant, new and hopeful world.

So it was with great excitement that I sat down with Kamila and Henry Markram after their presentation on August 1st.  I have not delineated who was speaking, other than to write my questions in bold, as the conversation was a casual one and the dialogue often overlapped.  What follows is an edited version of my interview as we spoke for close to an hour and I didn’t want to repeat much of what was covered in their terrific interview with John Scott Holman of Wrong Planet.  For a more thorough reading of The Intense World Theory of Autism read his interview ‘here‘.

In your presentation you spoke about neuroscience and how the biggest impediment to Autism is that it continues to be listed in the same category as mental retardation in the DSM.  (Diagnostic and Statistical Manual of Mental Disorders)  Can you talk about that a bit more?

“Autism is not a form of mental retardation. If parents approach their child as mentally retarded, then naturally they will apply a whole program of hammering the brain. If the Intense World Theory is correct, and the brain is already hyper-reactive, then this could just accelerate autism.  We have a grant now to study this for the Swiss National Science Foundation.  We hypothesize that you need an environment that is filtered from surprise.  Surprise can be painful.  You can’t easily undo the pain.  Memories shape your life.  normally, it is difficult to undo them, but for an autistic it is much more difficult to forget.  The other problem with Autism being listed as a form of mental retardation in the DSM is that it directs the way scientists research the problem. For decades, they have just been looking for deficits. So, the biggest impediment to Autism is the way it is classified in the DSM.  This should change.”

So what do you think of ABA as a recommended therapy during early intervention?

“It can be very dangerous and irresponsible.  ABA is for mental retardation.  Evidence points to the fact that ABA could be very dangerous for autistic children.  We don’t have proof yet, we don’t have an animal model, but the risk is very high. From our analysis of it, ABA, especially in the early phases, the critical developmental stage of from birth until about 5, is very dangerous.  You cannot know the intensity in which these children see the world and they are seeing things you can’t see.  There is a hyper emotionality.   ABA at an early age is definitely a no–no.”

How do parents facilitate the transition from this early phase of a filtered environment to the real world?

“The main critical periods for the brain during which time circuits form irreversibly are in the first few years (till about the age of 5 or so). We think this is an important age period when autism can either fully express to become a severe handicap or turned to become a major advantage. We think a calm filtered environment will not send the circuits into hyper-active modes, but the brain will keep most of its potential for plasticity. At later ages, filtered environments should help calm the autistic child and give them a starting point from where they can venture out. Each autistic child probably will first needs its own bubble environment before on can start mixing bubbles. It should happen mostly on its own, but with very gentle guidance and encouragement.  Do all you would want for your child ….but in slow motion…let the child set the pace…they need that control to feel secure enough to begin to venture off into any other other bubbles.”

Given that Autism is not a psychiatric illness, that it should not be in the DSM to begin with, but rather is a difference in neurology, what do you say to psychiatrists who are coming up with theories that people then believe as though these theories were fact?

“It is very difficult.  There are lots of theories , not so many facts.  Theory of Mind is a deficit model.  I think it’s been a very distorted interpretation.  When we first came out with the Intense World Theory people were quite opposed to it.  But now people are starting to move away from the deficit model.”

Your son is Autistic?

“Yes, he is now eighteen years old, living in Israel.  The opposite of what people tell you about autism, he is so emotional, he feels so intensely.  The smallest thing happens, he is mortally wounded.  He doesn’t know how to organize himself.  He has hyper memory.”   Henry:  “I’m pretty much also autistic.  I learned all kinds of tricks,  all kinds of strategies and I was able to develop tricks.”  

It seems a great many Autistic children also have GI issues.  What do you say to that?  

“When you alter something in the brain it alters the communication in the body.  It is very difficult to separate them.  All of these things could be secondary to a neural insult.”

What about diet?

“Some respond better to diet than others.  Some may be very sensitive to diet, not necessarily because of their autism.  Allergies can affect all people.  A diet can help the symptoms of autism if that is a stressor.  You need to lower the stressors, diet, sleep, all those things are stressors, combined with their sensory overload it’s going to exacerbate everything.  These aren’t treatments for autism, they are things that can place stress on an autistic child.”

What do you say to the parent who is considering drug treatments?

“Drugs are being given by doctors who have no idea how the neurons are affected. We are living in an illusion that we can easily treat brain disorders.  The human  brain project will change everything in the way we think and treat autism.”

Care to weigh in on the ongoing vaccination controversy?

“There is no evidence to support the connection.  The idea of toxic effects after the first trimester and the idea of toxic effects after birth seem very unlikely.  Parents should not avoid vaccinations.  I think the insult has to be in utero.  The first trimester is the danger.  Avoid anything extreme, no extreme stress.  That should be taken as a black out period for women from the moment they know they are pregnant.  Stay calm, sleep well, eat well.  All we can do is guess.”

Given the intensity of an Autistic child, how can we help manage their environment?

“In the early phase of the child’s life..  Repetition is a response to extreme fear.  The Autist perceives, feels and fears too much.  Let them have their routines, no computers, television, no sharp colors, no surprises.  It’s the opposite of what parents are told to do.  We actually think if you could develop a filtered environment in the early phase of life you could end up with an incredible genius child without many of the sensory challenges.”

Kamila Markram

Henry Markram

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