Tag Archives: ABA therapy

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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Preventative Measures

Posted on November 10, 2011 by | 1 comment

The New York Times published a piece in August of this year about the role the environment plays in the rise of autism.  It begins with the question asked by many people who are hoping to become parents  – What can we do to decrease the risk?

I have often thought about what I would have done differently, knowing what I now know.  There are a number of things, things I didn’t know to do or not do when I was pregnant with Emma.  There are a few things that appear to have some scientific basis to them, such as taking prenatal vitamins at least three months before getting pregnant and continuing to take them for the duration of the pregnancy.  I began taking them when I learned I was pregnant with Nic, though interestingly, with Emma I was taking them before I became pregnant with her and continued throughout the duration of my pregnancy.  I would not have eaten any fish of any kind during any part of my pregnancy.  I ate grilled swordfish a couple of times in my second trimester with Emma.  I also used fingernail polish remover a couple of times and had my hair highlighted once during my third trimester.   I would have stopped using all artificial sweeteners and I would have been more careful after the 9/11 attacks by not going downtown to Richard’s office in Soho to work.  Beyond those incidences, I did not take any drugs of any kind, not even aspirin, I didn’t consume caffeine or alcohol, I did not have an amniocentesis, avoided all and any invasive procedures, had two sonograms and gave birth naturally in a birthing center.  It seems unlikely that anything I did while pregnant contributed to her autism, but who knows?

After giving birth I would have done a number of things differently.  From the moment she took her first breath I would have eliminated all onion, garlic, dairy and wheat from my diet while I was breast feeding.  During those first few months when she was so uncomfortable and “colicky” I would have kept a food journal to see if there were other foods I was consuming that upset her and then eliminated those.  Since Emma seemed so uncomfortable when I breast fed and much preferred drinking breast milk from the bottle, I would have tried different techniques in swaddling her or having some sort of soft cloth between us so our skin to skin contact wasn’t so uncomfortable for her.  I would have started brushing therapy (click link for more detailed information on brushing) with joint compressions (see link for a detailed description of joint compression exercises) during this period as well.

Then there are the things I wish I had done much sooner such as  Dr. Marion Blank‘s literacy program instead of all those hours spent doing ABA.  I wish I had discouraged Emma from sucking her thumb.  I would not have introduced corn, soy, wheat, dairy or any foods that are thought to be problematic for some children.  I would have obtained an evaluation much sooner as well as taken her to a neurologist and had an MRI done before she was 18 months old.

Had I done all of those things, would any of it made a difference?  Except for introducing Dr. Blank’s program right away, which I am convinced would have made an enormous difference, who knows?  How much of a role does the environment play?  How much is due to genetics?  I have questions, lots of questions.  None of which will likely be answered any time soon.

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

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Posted in Alternative Therapies, Autism, diets, Parenting

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An Inability to Generalize

Posted on May 23, 2011 by | Leave a comment

I first heard that term used in reference to Emma almost seven years ago now.  It was one of those things people say, in this case her early intervention therapists, where you hear the words, you know what they are saying, but how exactly this is being applied to one’s own child suddenly doesn’t seem clear at all.

Emma, like many children diagnosed with autism, has a difficult time applying something she’s learned in different situations and settings.  For example when she was much younger, I tried to teach her what a t-shirt looked like by holding up an actual t-shirt, one of hers with a pink heart on it, she was able to remember what that particular t-shirt looked like and called it a “t-shirt”.  If I then took out a different t-shirt, one of mine or a different colored t-shirt from her drawer, she was not necessarily able to understand that this too was called a “t-shirt”.  If I showed her a flashcard with a green t-shirt and explained that this was the color green and then pointed to a slightly different shade of green, and perhaps on a chair, she wasn’t able to tell me that the color I was pointing to was green.  Temple Grandin, speaks about this at length, she calls it “thinking in pictures.”  She says she stores images in her mind and then flips through the images to come up with the correct one to fit the word being used.  She then goes on to describe how problematic this retrieval system is for her.  One can easily understand how difficult that must be.

Over the weekend I worked with Emma on two words:  “yes” and “not”.  “Yes” was a bit easier for her to incorporate into her writing, but “not” completely threw her.  If I said, “Emma, what are these?” and pointed to a picture of three trucks.  She answered correctly, “These are trucks.”  If I then asked her, “Are these trucks?” pointing to the trucks, she was able to understand that if you answer, “Yes, these are trucks” it didn’t change the structure of the sentence, one just needed to add “yes” to the beginning of the sentence.  But if I then asked, “Emma, are these trucks?” while pointing to three frogs, she had a terrible time answering, “These are not trucks.”  When I asked her, “Emma, give me the one that cannot walk,” from a field of four objects: a bus, a truck, a plane and a kid,” she handed me the kid.

I know Emma understands what “not” means, but in this context she was baffled.  It reminded me of those first few years when we were new to all of this, and almost constantly perplexed by almost everything she said and did.  I remember watching in dismay as she proceeded to memorize several hundred flashcards that her therapists used with her.  The therapist would hold up a card with a picture of a bike, and Emma would shout, “bike!”, the card with a dress, Emma would yell, “dress!” and on it went.  I fully expected her to go on to a regular kindergarten, at the rate she was going.  But very quickly I realized that though she had no trouble with her memory, could memorize some 400 flashcards, she could not use the information beyond the flashcards.  In other words, the information wasn’t being translated across a larger field.  She did not use the words, we now knew she knew in everyday sentences.  If we went out into the park and I saw a kid on a bike and said, “Em, look!  What’s that kid riding on?” she couldn’t tell me it was a bike.  It didn’t look exactly like the flashcard with a bike.  For one thing it was a kid’s bike and for another it had pink plastic tassels on the handlebars and a little bell with a picture of Dora on it.  This bike looked completely different from the bike on the flashcard and so Emma was at a loss as to what this new thing was called.

The good news is, Emma now can identify a bike, any bike, but it took awhile.  This is what we are up against when trying to teach Emma.

For more on Emma’s courageous journey through a childhood of autism and our admiration for her, go to: www.EmmasHopeBook.com

Emma with her green blanket when she was 3.

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Desperation & Coping (Part Two)

Posted on September 10, 2010 by | Leave a comment

For the first two years after Emma was diagnosed we did an aggressive intervention of ABA (Applied Behavior Analysis) therapy – 40 hours a week with additional speech therapy and Occupational therapy.  Advocates of ABA believe it is the only therapeutic intervention for autism that has any scientific validity.  Others have questioned those studies, claiming Lovaas used only the highest functioning children to obtain his results, which were published in 1987.

Regardless, ABA did not help Emma.  In fact, she “flat lined”.  We were called into the principal’s office of the pre-school she was then attending and were told Emma’s lack of progress was a “red flag”.   While other children at her pre-school flourished, going on to be mainstreamed even, Emma stalled out, unable to generalize the things she learned in the classroom setting, unable to make progress.  I have spoken to dozens of parents whose children have been helped using ABA, parents who swear it was the single most important thing they did for their child, and yet, for Emma, ABA did not help.  It is easy to feel angry, blame the therapy, blame the child, blame something rather than acknowledge how baffling and insidious autism is.

It was around this period when we found Stanley Greenspan and began his DIR/Floortime therapy with Emma.  For more on Stanley Greenspan see “A Tribute to Stanley Greenspan”.

While Emma responds much better to the DIR model, she still continues to confound experts in the field.  She has not progressed as quickly as any expected or hoped.

When Emma was first diagnosed we were given a diagnosis of PDD-NOS.  We were told to watch her, that perhaps she would “grow out of it” or if not, then at least we would have begun an aggressive early intervention program which would undoubtedly have her mainstreamed by the time she was in kindergarten.  This was not to be, however.  Emma was not mainstreamed when she reached the age to enter kindergarten.  In fact, her diagnosis changed to “Autism” and though she was considered “mildly” autistic, by the time she was 7, she was categorized as moderately so.  How to explain this?

We cannot.  None of the “specialists” we’ve seen can either.  The only thing that has really changed is all those “specialists” no longer offer their long-term view of where she’ll be in another few years.  Gone, are the comforting talks of how she’ll soon be mainstreamed, no longer do we hear the cheerful prediction that she’s – “on her way”.

Desperation can make for odd decisions, but for those of us who have attempted to manage our feelings of overwhelm as we do our best to live our lives with an autistic child, it is a feeling we are all too familiar with.  Richard and I have tried any number of remedies. Were I not the mother of an autistic child I would respond to many of the very things we’ve tried with an incredulous shake of my head.  When someone tells me their child has had several hundred treatments in a hyperbaric chamber, I do not think – Poor fools, they really are clutching at straws – I take notes.  How could anyone believe ____________________ (fill in the blank) would work?  We don’t believe as much as we hope.   We will do anything we can to help our daughter.

Desperation?  Probably.

Coping?  Absolutely.

Emma – August, 2010

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The Beginning

Posted on April 7, 2010 by | Leave a comment

“Does she ever point?” the evaluating psychologist asked us one day toward the end of another grueling session where Emma was suppose to play with a series of plastic ‘nesting’ cups.  Emma showed zero interest in the nesting cups or, for that matter, in any of the other dozens of toys the woman had brought with her.  Richard and I looked at each other and slowly shook our heads, no.  “Is that important?” I remember one of us asking.  “Yes, a typically developing child will always point to things that they are either interested in or want to know the word for.”  I will never forget that instant as it became a defining moment in the evaluation.  The evaluation that ended in a diagnosis of PDD-NOS when Emma was two and a half .

It had been only a month before – August of 2004 when Emma stopped speaking almost completely.  She had begun to slide more and more into her own world which did not seem to include any of us.  Her interest in anything ‘outside’ diminished. But she seemed to have a busy internal life, one that we were not privy to, nor able to share with her.  I dealt with the diagnosis with my usual pull-up-your-boot-straps-let’s-figure-this-thing-out-and-fix-it attitude.  I come from a long line of strong, independent women and this was the mode I fell into.  The first thing to do, I thought, was find out what autism was.  I had no idea, my only reference was a mixture of “Rain Man” and some books I had read as a young adult, which posited that the mother was ultimately to blame and that autism was the child’s emotional response to an unloving, controlling mother.  Undaunted, off I went to the book store where I spent hours reading.  The first book was about a woman living in New York City whose child was diagnosed with autism and so she adopted a vigorous program of ABA therapy, hired a young girl to help her and after a few years, the child was normally functioning and off to a main stream school.  Another book recommended a casein/gluten free diet.  I remember talking with one of Emma’s early intervention therapists who said she thought Emma would be mainstreamed by the time she was in kindergarten.  I had it in my mind that we were in for a few tough years, but with perseverance and a great deal of hard work, we would see this thing through.  I can do this, I thought and when it was all behind us, we would look back with a smile and say, “oh remember when..”

But ABA did not help Emma.  She has a phenomenal memory and memorized all 400 of the ABA flash cards, but when presented with a similar object, one that she knew from the flash card – such as a blue t-shirt – yet if I held up a blue blanket or one of her blue shirts, she could not tell us what the color was.  It became frighteningly clear that Emma could not generalize the information.

Back to the book store I went, returning home with an arm load of new books on autism.

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Our Emma

Posted on April 5, 2010 by | 10 comments

What lengths would you go to if your child were diagnosed with autism?

This blog is about what we have learned, what we have done and continue to try in the hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her and what drives us to go to such extremes to help her, hopefully, achieve some day.

Five and a half years ago we received the news that she had been diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified).  Since then it has been nothing less than a wild roller coaster ride of hope, disillusionment, gratitude, determination and perseverance.

Here are some of the therapies we have tried in the last five plus years:

Gluten/Casein free diet – no noticeable change after five months

Homeopathy – up to 13 tinctures a day delivered orally – suppose to help her gut issues – no noticeable change after more than 10 months.

Cranial Sacro Therapy – did seem to help her constipation issues at first, but over a longer period (close to a year) did not appear to help enough to warrant continuing.

Qigong Master – suppose to help regulate her “energy flow” and promised to “cure” her autism – no discernible change after almost 6 months.

Chelation – we did one round before discontinuing upon advisement from a number of lead and metal specialists out of Albert Einstein College of Medicine.

Detox Foot pads – Pads that supposedly draw toxins from the body while she slept.  No noticeable change after several months.

Brushing Therapy – Emma became very hyper as a result of brushing therapy and after her sleep became disrupted we discontinued.

Auditory Integration Therapy – while this therapy did not seem to adversely effect her, it did not appear to help either.  We discontinued after a few years when she began objecting to it.

Hyperbaric Chamber – We did not do more than 10 sessions.  So I cannot comment on whether this may have helped or not.  We discontinued because we were starting the stem cell therapy and wanted to do one over the other.

ABA (Applied Behavioral Analysis) – 40 hours per week – we discontinued after two years when Emma began regressing.

Stanley Greenspan’s Floortime Therapy – We continue to use Stanley’s DIR methods.  Emma has made noticeable improvements in language – both receptive and expressive – as well as shows a real interest in initiating play with others, both adults and peers, as well as a huge uptick in imaginary play as a result.

Stem Cell Therapy – The Institute for Cellular Medicine – Costa Rica

We took our daughter Emma for her first bout of stem cell treatments with the hope that they might help her autism in March, 2010.  The Institute for Cellular Medicine was introduced to us by Emma’s neuroscientist in New York City.  This treatment is in it’s infancy, they have only treated about 100 autistic children, but are seeing promising results.  The stem cells were harvested from umbilical cord blood and mixed with her own blood serum..  They then injected this mixture intrathecally and intravenously on Tuesday and again on Thursday.  She was sedated for all procedures.  Emma had a bad reaction to the first round, evidently fluid leaked from her spinal cord causing blinding headaches and vomiting.  We were able to calm her with pain medication and by Wednesday evening she felt much, much better.  We decided to go ahead with Thursdays treatment and had them sedate her after the procedure to ensure that she lie flat and thus lessen the likelihood of seepage from her spine.  She was also given a drug to reduce nausea.  She rested in the hospital with us by her side for almost four hours.  We have been told that we should not expect to see any significant change for a month or two.  We will be returning to Costa Rica for round two in August.

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