From Quirky to
Indistinguishable?
This is probably the most difficult stage of our ABA program. I am not entirely sure that we are “Indistinguishable”. He does not really exhibit enough of the DSM criteria to be considered autistic. He does not score anywhere near the cutoff for autism on the C.A.R.S. test. Part of the reason is because Lukas is not like everyone else. This is not necessarily a negative thing either. Lukas is unique. He is a character. He is gregarious. If he was more shy, he could blend in more. It is ironic to say that a person who carried an autism label is way too friendly and wants to engage with people too much. He is well aware of differences between himself and others. It is not a lack of theory of mind either. Part of the problem is that he doesn’t care that he is different. For him, being different is good. An example:
His
first grade class got a special treat-
an assembly! They didn’t have
their afternoon lesson as usual.
Lukas came home to tell me about it.
He told me that his teacher read the announcement to the class. He then looked at me and said, “mom?
Know what the class did? “
“what?”
I replied.
“They
all yelled “yes!” and “yay!”.”
“oh?” I said, smiling.
“yeah. But not ME! I yelled JUMPING
JOE! I was different”
Lukas
looked at me with a big grin on his face.
He was happy that he was different.
He thought it was cool. Lukas is
also a bit hyperactive. This doesn’t
mean that he is constantly bouncing off the walls but he does constantly MOVE
and DO things. His mind is constantly
going. I have had to ban him from the
kitchen because he would constantly “do experiments”. I don’t think I have ever heard Lukas say “mom?
I am booooored. I having
nothing to do.”
I
think that one has to look at what they think the term “Indistinguishable”
means. Some have defined it in terms
of cognitive, social, and language testing.
Is the child within normal limits?
Others have defined it as meaning that an autism expert will go into a
classroom and observe, not knowing who the labeled child is, and if the expert
can’t pick the child out, then the
child is indistinguishable. We decided
that for us, indistinguishable would be our goal. Indistinguishable meant that he would test within normal range on
language tests and social behavior.
Part of being indistinguishable meant that we could leave him in a room
full of people and not have to disclose the label incase he did anything
“weird”. Some parents, even parents of
Aspergers and “high functioning autism” children end up having to disclose,
wherever they go, the label of their child.
One reason is that their child might be prone to tantrums or total
sudden meltdowns. We did not want that
for Lukas. We felt that if Lukas couldn’t lose his autism label, then we should at least equip him with the
tools to control his autism.
Autism would either be irrelevant or controlled by Lukas.
We
saw his particular autism like a disease.
I know that offends some people, especially some adults with autism who
are doing remarkably well. I can here
them say “ I am not a disease.”
Well, I didn’t
say the people with autism are a disease. We don’t see autism as a central part of who Lukas is. Lukas is a person. Lukas is an individual. He is not a label.
“My
child had the measles once. It was a
little scary but he pulled through.”
That sentence above is well accepted by many. No one would ever suggest that measles was a central part of who his or her child was.
“My child had autism. It was rough going but he recovered.”
Why
is that so hard for people to accept? I
think that is because autism has been in the domain of psychiatrists and
psychologists for decades and it is hard to move beyond that. It is still diagnosed through psychiatric
manuals even though everyone agrees that it is a neurological disorder. Since not all children will recover, it is hard to accept that such a thing is even
possible. 50 years ago, most
professionals didn’t even think that children with autism could really learn,
despite evidence that even a chicken in a lab could learn.. 30 years ago, it was blamed on bad mothering despite evidence that many
children who are horribly abused do not suffer from autism.. We now know it is neurological in origin and
has nothing to do with parenting. We
now know that children can learn. Some
do not believe recovery is possible despite that the fact that there are recovered
children. Perhaps when there are enough
recovered children, they will change
their opinion. It seems as though public opinion and the opinion of
professionals tend to run decades behind scientific proof.
If
Lukas couldn’t recover from autism like some recover from the measles, then we
would accept that. Accepting this
though doesn’t mean that you let it take whatever course it may. We would treat this neurological condition
like some parents treat Diabetes.
“My child has diabetes. He
controls it and there is no need to tell the entire world about it. His doctors know and treat it well and he
has learned to take care of himself and knows the warning signs of when his
sugar levels are off. The medications
and educating him has kept it from affecting him too much. He knows how to take care of reactions.”
“My child has
autism. He controls it and there is no need to tell the entire world about
it. His doctors know and treat it well
and he has learned to take care of himself and knows the warning signs of when
his autism is causing him to be off.
The medications and educating him has kept it from affecting him too
much. He knows how to take care of
reactions.”
Either
way, we believed and still believe
that Lukas can be indistinguishable in that we won’t have to advertise his
label “just in case”.
However,
when we finished out most of the Lovaas curriculum, we found that he wasn’t
suddenly “okay”. Our consultant said that this was a “fine tuning” stage of
ironing out any autism “residuals”.
What I don’t know is how many children who go through an entire Lovaas
curriculum need “fine tuning”. There
doesn’t seem to be any real research on this. It is possible that some receive intervention early enough that
they begin to learn those subtle social rules right along with their
peers. I don’t know what makes these
children different from children who sail through Lovaas or Verbal Behavior
programs and still need tweaking.
Ever
do a literature search for materials that will tell you how to take your child
from Quirkey to Indistinguishable?
There isn’t anything. I was
disappointed. All these ABA experts
say that they have seen child who are and yet,
no one had put together anything that would tell others how to go that
last 100 yards. Catherine Maurice
didn’t write anything about this stage.
There wasn’t extensive notes on the Me-list from other parents. It certainly wasn’t in Dr. Lovaas’ outdated
Me-book. Work in Progress? No.
The ABLLS assessment guide?
No. A Carbone workshop? Heck no.
Why?
Well, there are a number of reasons.
Three
children who are recovered and have notes on how the intervention program was
designed are Catherine Maurices’ two children and the Sumlins. The Sumlins are a family that has left
detailed descriptions of their program for Me-List members. I am assuming that they must not have had a
period of “quirkey to indistinguishable”.
There just isn’t any notes on their therapists puzzling over what is not
right. Perhaps their intervention began
early enough that the child started to learn some of these social and language
skills on their own in preschool when most NT kids are a little quirkey
themselves. They seemed to have done a
number of social stories and shaping but again, they were still in an ABA program while doing this. It appears as though they hadn’t run out of
programs and were still struggling with social issues. Perhaps the type of
autism that these two children had let them be recoverable. Either way, I am under the impression that
they did not struggle with older children and quirks. My child was very
different at two and three from the Sumlin child and Maurice’s child. It would make sense that he would still be
different from them at 6 years of age.
I
also know that I am more picky than some parents. I look for “residuals” in more subtle ways. I can “pass” Lukas among parents of other NT
children but I can still see where he struggles. Perhaps others would call him
Indistinguishable long before I would.
I have not yet decided if I am just hypercritical or not. I do think that some skilled parents running
ABA programs would be able to pick him out- after a while.
The
other reason I think there isn’t a Fine-Tuning Guide for Dummies is that children at this stage are more
different than alike. Each quirk is
different. Each child will have
different quirks. There isn’t enough
common quirks among children with autism to write a common flow chart on.
So
what have we done? What are we doing?
We
watched Lukas. We had literally
hundreds of hours of observation. We
looked at what made him “bad” different.
We didn’t want him thinking that being different was bad. It wasn’t.
It isn’t. However, there are
times that being different is bad. This
isn’t black and white. There are shades
of gray. Liking different toys is a
good different. Licking snot off your
nose is a bad different. For us, bad
different were things that would socially isolate Lukas. Good quirks might be something like having a
love for Tabasco sauce on everything. A
bad quirk would be talking to your self while in a bathroom stall.
My
first piece of advice is to not work on everything at once. You will go crazy if you do and your child
may find the pressure to be too much.
Pick one “quirk” at a time.
Think back to the early ABA days.
You didn’t work on three years worth of IEP goals on the same day. You picked a few goals at a time and worked
on them until mastery before picking up the next goals.
The
same still applies to fine tuning. You
have to actually place your child in social situations to see where the
weaknesses are. School is not always
the best place to judge this. Very
little valuable social skills occur in skill.
Group skills like sitting nicely in circle time, lining up, and learning
to not talk out loud are practiced. It
is only in places like recess can you see where the child is different.
For
us, Recess was a bit like Lord of the Flies.
For whatever reason, teachers never seem to be very involved in this
time. No matter what school we have
attended, recess has meant 40-60 kids
all running around an enclosed space while 2-4 teacher aides stand in
one corner of the playground talking.
While 1st grade was better in that teachers actually watched
over their own flock, they still didn’t
walk around the playground and actually listen to the children. They were way
too far away to actually HEAR what the children were saying. They didn’t offer appropriate activities and
encourage social skills. It was 40-60
kids contained but not guided. It is
moments like this that you can see where your child is the most weak. Does he negotiate groups or is he a
loner? It is the loner kids that are
targets for bullies. Does he handle
being bullied well or does he crumble and make himself a bigger target for
bullies? Does he have a variety of
activities he can do should his favourite thing be unavailable? Does he have more than just one child he can
play with?
We
developed many programs specifically for Lukas to iron out some of the
quirks. These programs include Discrimination Training, People Watch, NVLD, I FEEL,
Check Me,
RDI,
TOM (theory of mind) , TOM/Syntax, and ICPS all of which are described in
detail on this website. These programs
addressed the fine-tuning issues that Lukas specifically had. You may find that some of these issues are
not the same for another child. Only
through careful observation of novel social situations can one really figure
out what subtle issues are there. If
you never put your child into settings where they might fail, then you will
never truly iron out those quirks that will prevent them from having
friends, getting along with coworkers,
and learning to navigate the world -
which is full of people who will not be very reinforcing.
Discrimination
training was largely based in DTT teaching and ABA. People Watch, NVLD, and I Feel are programs developed after
hearing Dr. Nowicki on a public radio program.
While he was addressing the needs of children with Nonverbal Language
Disorders, we felt that it would
benefit Lukas. We bought the book
“Teaching Your Child the Language of Social Success” by Marshall and Nowicki[1]. We found the materials to be very helpful
and we wished we had read the book sooner.
If we had, we would have
implemented its suggestions into our gestures and emotions program. This
would have been a logical “follow up” program to these two common ABA
programs. People Watch would have been
another logical program to use after the describe, emotions, and TOM
program. RDI was based on Dr. Steven
Gutstein’s book Solving the Relationship Puzzle[2]. If we had read this book when we started
ABA, then all downtime play of our
program would have not been “free time” but a time to work on social
programming. Dr. Gutstein’s book
actually flows well with ABA and is a perfect tool to generalize skills
taught. It gives therapists a guide on
what to do which I think is important because so many therapists have forgotten
how to play and enjoy play. TOM and
then the program that evolved out of it, TOM/Syntax were taken from many
resources: the me-list, Teaching
Children with Autism to Mind read, Mind
blindness, developmental checklists,
etc.
ICPS
program comes from Mryna Shure’s book “I Can Problem Solve”[3]
. While she wrote the book for a
classroom, it was easily adapted to our
ABA program. Lastly, teaching Lukas to defend himself and to
learn that people are not always as nice as his tutors, was a major step in equipping him to deal
with life in the public school jungle.
I should point out that we learned very early on that Carol Gray Social
Stories were NOT an option for us and that most “autism” books that claimed to
teach social behavior, did not work
with Lukas and actually made things worse.
See “Social
Stories- Not always the answer to autism. Our decisions to move away from rule
based teaching that is pervasive among
autism professionals” in the essay section of our website for a more
detailed explaination of why.
Fine
tuning can be one of the single hardest stages because your therapy team has to
decide the all important question of “what is normal?” Is this how a person should respond? Is this how a person should think? Is this a cultural bias of your own
upbringing versus a true skill that you should have?
We
are a multicultural, multilingual
family. We are living in a particular
part of the world that neither my husband nor I totally understand. The values, expressions, and way of thinking
and living here are different. I have watched how our family communicates. My family is known for being more reserved
and communicating through nonverbal expressions. I once invited a friend to dinner with my father and
sister.. After dinner, he told me that it was the weirdest
experience he ever had. He said that he
was constantly under the feeling that he was missing something. We didn’t finish our sentences. We did a lot of nodding and facial
expressions. He had no clue what we
were talking about virtually the entire night.
My family must seem so rigid, antisocial, and nonverbal to that of my
in-laws.
On
the other hand, my husband’s family is
quite the opposite. They speak loudly.
They speak over each other. They use
their hands and bodies to speak. They
use circular reasoning. Their use of nonverbal language and voice is completely
opposite my own. They finish their
sentences and then some! This seems
normal to my in-laws. To my family,
this could appear to be uncontrolled, lacking in both social skills and logical
thought to my side of the family.
Is
it fair for me to apply my own cultural upbringing to the term normal?
I
remember that I was once annoyed by a comment made in the book, A Work in
Progress by Ron Leaf. While I highly
suggest this book for parents who are wanting to know more about ABA and
different methods of teaching DTT, I also
know that they made a cultural judgment in the book. It was on the issue of sleeping in parents’ beds. The authors said that it was very
important to work on getting the child to sleep in their own bed because you
don’t want to have this child sleep in your bed until they go off for
college. This was not an autism
issue. This is not a behavioral
issue. This is a rather puritan bias
against co-sleeping made by authours who would never dream that a child could
go up in a small apartment with only one or two bedrooms for four or more
people. If a parent can’t sleep with a
child in their bed, then yes, you can suggest a behavioral method for
teaching that child to sleep in their own bed. It is only a problem if it is
a problem for the parent and they do not feel comfortable. However, thousands of parents who practice
Attachment Parenting, don’t see this as a problem. We used to live in a small two bedroom flat with our in-laws and
our son. Co-sleeping was a fact of
life not just for us, but for many families in our building. I think the
authors of a Work in Progress would find that none of these foreign families
have problems with their teenage children insisting on sleeping next to
mom. Many parents who believe in
attachment parenting, will testify that their teenage children are not sleeping
in their beds. We chose to ignore
this. The authors of this book made a
cultural judgment, not a developmental one.
Our son, Lukas, has always had the option of his own bed. We have always put him to bed at night in
his own bed. Over the years, he would get up in the night and lay down
next to us. Now, at seven, he sleeps mostly in his own bed. A few times a month, he gets up in the wee
hours of the morning (4 or 5am) and comes in and snuggles until we get up at
7. Even this is slowly fading. For us, it wasn’t and isn’t a problem.
I
must also confess a personal preference.
I like colourful people. I like
people who are unique and interesting.
I even like people from Berkeley, California. J I
am not sure that I would want just an average child who goes unnoticed in the
world. I can’t talk out of both sides
of my mouth. I can’t raise Lukas to be
independent and to think for himself and then turn around and point out
everything in his life that makes him look different from John Doe and Jane
Doe. I can’t teach him to accept
differences and then turn around and cost response his differences. We have to
strike a balance.
I
would rather be the parent of the child that shocked an entire congregation by
sitting in the bishop’s chair rather than in his pew and proclaimed that he
wanted to become the next bishop than be the parent of a child who stares
blankly at you and says “I dunno” when you ask them what they think they will
do when they grow up. With Lukas, anything is possible. He will be happy so long as we iron out
those bad quirks. J
I
don’t see our current job as all that different from a neurotypical parent’s.
Broadly speaking, we are hoping that we
raise Lukas with habits in manners and civility. We want him to learn to be kind and accepting. We are also teaching him how to be
independent and stand up for himself and his beliefs. Perhaps if parents of neurotypical children spent even a fourth
of the time that we do on this, I would officially close the book on
Fine-Tuning. Unfortunately, I think this process will go on another year
or two.