Tag Archives: Applied behavior analysis

Tackling That Troublesome Issue of ABA and Ethics

Posted on October 10, 2012 | 119 Comments

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!

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Want to Know About Autism? Ask An Autistic

Posted on August 27, 2012 | 42 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 under turned, 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 | 21 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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