A Word About Therapy Bashing

So what if ABA isn't the be-all-end-all?  So what if the diet didn't help?  So what if kids
still have issues after recovery?  We have come a long way, baby.  We should be
celebrating the fact that there are effective treatments out there to get these kids this
far,regardless of what still isn't "fixed".  Just think about what we used to do with kids
that had Autism.  Institution city!  There continues to be no magic bullet, but fabulous
treatments that get better and better each year.  Each kid has their own unique "special
blend of ASD".  This requires their own unique "special blend" of therapies.  It just
doesn't matter what it is called, who it worked for, or who it DIDN'T work for.  

"Special blend" of therapy?  What is that?  There are definitions galore for ABA.  Diets -
tons of variations.  Practioners?  Therapists?  Tutors?  Teachers?  How about their
experience, own philosophy, training?   How could we EVER make a blanket statement
about a certain therapy option?  It's like saying "all cancer medications don't work".   Or,
"all lawyers are really great".  Stuff like that.  

Recovery is a fairly new concept.  Dramatic improvement is a fairly new concept as
well.  Therapy bashing really comes into play when people discuss recovery.  The  
recent technology that addresses social issues which in turn "finish" a child isn't widely
known. Therefore, older kids that didn't get this new technology  are at risk.  They may
eventually "fall down" by 3rd grade with metacognition or later.  The technology I'm
referring to is called Theory Of Mind, as well as executive functioning and abstract
thinking programming. It's usually delivered "embedded in play" style, and it's part of
ABA.  Uta Frith is the "father" of theory of mind, and Simon Baron Cohen wrote the
groundbreaking essay called "Mindblindness".  His curriculum, "Teaching Children With
Autism To Mindread" is what ABA therapists that have had training in theory of mind
often use to design a program for a child.  

Theory of Mind is the "root" of autism.  It's the lack of a natural ability to read other
people's  emotional states; taking others' perspectives, see motive, intent,desire, etc in
others.  We all  learn this naturally and can keep learning and generalize as we get
older.  Unless you teach a child "how to learn" they will have to be taught year after
year how to "be" that age.  The child can "look good" for only so long until the other
kids catch on.  

With theory of mind programming, delivered via NET (natural environment training) ABA
or RDI, or something else, children can learn from their environment, enjoy emotional
reciprocity and enriched relationships with others.  Luckily for us, my child reached the
stage AND was blessed to have experienced professionals that understood how to
finish him out.

Leo will always learn differently, since their is no cure for his  neurological make-up.
However, children can achieve normal function even though they are wired differently.  I
do not think my son will not "fall down" at a later date.  However, I have full confidence
my son will have teen angst, bouts of anxiety, self-doubt, and other "normal" problems
because he is a child.  

Here in CT only 4 people I know of are proficient in these particular programs that are a
part of ABA.  People think of ABA and think of discrete trial.  This is only a portion of
ABA.  RDI, VBA, and other philosophies now have programs that can tackle this very  
sophisticated issue of socialization.  I know personally a few children that are older and
indeed have no issues because they were lucky enough to have access to this
programming. Others that didn't get this have indeed suffered from ridicule and
continue to not fit in.  They will never catch on.  It's the definition of the disability.  After
all, being human is complicated.

TO:  Shafer Report, Letter to the Editor

DATE:  1/26/05

RE:  Letters regarding the NY Times articles, and future efforts by their
reporters

I am very concerned about the attempts at discrediting various interventions by the
press, and  most shockingly by other parents.  These parents should be ashamed of
themselves for adding fuel to the myth that Autism is untreatable and only comes in the
form of the stereotype.  They have allowed their personal experiences with proven,
effective therapies to interfere with considering the countless of unique children out
there that need our support.  How many parents will not even consider ABA because of
parents like Barbara Barker?  That happened to us personally.  We heard ABA was
bad from another parent, so 1 ½ years went by.  Later, we met a DIFFERENT
consultant that "got" our child's specific needs, and our special ABA program became
the cornerstone to my son’s recovery.  These comments do a heck of a lot of damage
to all of our children.  

We all need to take the perspective of the press.  They are not the experts.  They are
only  looking for a good story, something provocative.  They cannot possibly
understand this complex life after a few interviews.  They are on the side of the NIH and
the insurance companies that are looking for parents like Barbara Barker.  They are
looking for researchers to make one negative comment and take it out of context, so
they can get out of paying for these life changing services.  

All of this is about children.   The news about effective treatment for Autism should be a
celebration in the press and with every parent as well, regardless if a specific treatment
helped or not.   All families should consider ALL viable treatment options.  We all need
to consider how our comments will serve in maximizing the potential of each individual,
regardless of where they end up.  

As a parent of a newly recovered child, I too have seen with my own eyes how each
child responds so differently, even in the same family, to therapies.   Honestly, I have
very little faith  that a neat little package of research for each therapy will ever exist,
since no loving parent will  put science before the welfare of their own kid.  

I fear that parents will no longer "leave no stone unturned" regarding treatment.  This
scares me, a potential for  improvement, even dramatic improvement, not even
attempted.  It’s critical to keep top of mind that each child is different and responds to
their own “special blend” of therapies.  

There is such a wide description of programs and philosophies behind each therapist.   
Making blanket statements about ABA or dietary intervention is dangerous.   Behind
any fabulous recommendation is a person that did the therapy.  People will always
recommend what worked for their kid because it worked AND because of the details of
the program and people who did it.  

My hope in writing this letter, is that parents and researchers will seriously consider
what they say before they criticize what helps many many children have a life.   

More on this subject by Catherine Maurice


Hidden Recovery