Tag Archives: Applied Behavioral Analysis

“No ABA”

A few days ago I wrote about a conversation Emma had where she said she’d like to open a center she would call, “Emma’s Hope Care.”  You can read that piece ‘here‘.  In addition to writing that the center’s philosophy would be “no Autistic child left behind”, she wrote, “no behavior management.”  In response, a commenter asked Emma “What would you do to help children cope with their feelings in our society?”

I showed Emma the comment and asked her to elaborate a bit more on her words – “no behavior management” before asking if she would answer the commenter’s question.

This conversation took several sessions to complete.

A:  Hey Em.  I was wondering if we could talk about Emma’s Hope Care.  Would that be okay?

E:  Yes.

A:  What did you mean when you wrote “no behavior management”?

E:  No ABA.

A:  That was a long time ago, when you were just two years old.  We stopped when you were four.  Do you remember the ABA you had?

E:  Yes.

A:  Will you tell me your experience of it?

E:  I was treated with mostly kindness, but the therapists could not see beyond their training.  I learn quickly, but am not able to reply with words that sound right to another.

Worry becomes everyone’s focus.

Real learning happens when no one notices.

The goals waste away.

Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.

During a separate session Emma answered the question, “What would you do to help children cope with their feelings in our society?” from the Conversing With Emma post.

First cope with your own feelings.  Second listen to the child.  Provide them with patience, accepting their feelings as valid and respecting that this will change as they grow older.

Emma during the ABA years...

Emma during the ABA years…

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

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