Disucssion about ABA and RDI from web forum

[evaj...@hotmail.com]

Hello all,

We are very new to RDI so I have nothing to report. I promise to share
what I see between the two. We also have a RDI consultant that is an
ABA person too. I think they can be blended but I do wonder about some
of the basic conflicts between the two methods.
For instance after our RDA the consultant mentioned Sean relies
heavily on verbal input and is very verbal. This is because of ABA.
The suggestion is to limit verbal input and focus on non verbal
interactions.

We are sure going to have trouble w/ that. Mom and Son as we are
constantly talking.

He has got the mand down. As a matter of fact he has become very good
at the DEMAND so much so that we are working on this. He is developing
negotiation skills but under protest. YELLING what he wants me to do
is so much easier than using please, nice words, a friendly voice and
doing what someone else wants fist. Whew it is like I have a terrible
2-3yo at age 5.

Chris
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I notice there are a lot of members in this group and only a few post.
Laura DeAngelo used to post a lot, and my experience was that often
her very thoughtful responses prompted either a lot of negative
comments about RDI, or responses that really good ABA does the same
thing. I have not found this group to be a very friendly RDI
environment, although I'm interested in what the members are thinking,
feeling and experiencing.
Even this quote:
As far as why we're not talking about RDI as much on this list: well,
that's quite telling in and of itself, isn't it? It's hard for folks
like us who are evidence-driven to shift too much to the other side.
Again, I feel a general resistance to RDI and a lot of "yes, maybe
it's okay, BUT" on the list. I, for one, don't have the time to engage
in defending something that the majority here don't really seem to
want to embrace. There are many other places to discuss RDI and what
we find is working without the negative energy.
That said, I will comment that RDI is based on very thorough
research....the research on typical child development. Read a few of the
books from the Connections Center "hot list", particularly Alan
Fogel's Developing Through Relationships. All this material is easily
accessed. Dr. Gutstein states over and over that RDI isn't something
he invented....what he has done is synthesize the research on child
development/language acquisition and organized it so that it is
useable for parents of children with autism AND figured out a way to
help others see what is happening with the kids in relation to these
principles (that would be the Consultants). By the way, this
information is fascinating, but most of the books are pretty tough
reads.
I am an RDI Consultant on the brink of certification. The process has
been the most demanding work I have ever experienced. I have an M.A.,
hold Special Ed teacher certification, am a certified life coach, and
I am well-grounded in behavioral intervention, including having
supervised several behaviorists. What I am finding in my RDI work is
that kids who have had a lot of ABA are the most difficult to work
with on RDI activities...either they regard interactions as "work" and
will stay and do what they perceive to be a task for only very short
periods of time, then decide the "work" is over, so it's time to
return to whatever they do on their own, or they are hyper-verbal, but
mostly with scripts, not spontaneous reciprocal communication. The
parents who talk to their children a lot are not having conversations,
but are telling them...prompting them...on what to do. There is no
conversing going on about the weather, how school was, what they are
feeling,etc. This may only be my experience, however. I do know that
the parents of children on the spectrum who have been working on RDI
with their kids (including one mom who is nearing her BCBA status) are
pleased with the results. Their children are referencing them, they
are sharing emotion, they are staying by their side at the grocery
store, they seek them out to share discoveries. Even children whose
behavior has been most difficult (generally major melt downs), are now
much more able to control their reactions to frustration, confusion,
etc. They stim much less, I believe because they are involved in
objective-related activities with their parents. This is my
observation from a fairly small case load of about 10 kids/families at
the moment. One other thing...the parents are liking their kids a lot
more...they are having fun parenting them and are doing things typical
families do.
I am not trying to change anyone's mind, really, but felt I needed to
mention why, from my perspective, this list does not draw more RDI
participation. But, I'd read the list just to see what Mike is writing/
thinking/feeling.
Dema Stout, M.A.
RDI Consultant in Training (all requirements submitted...hooray!)

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Dema, thanks for your post. My impression is that many of us here
(I'm not saying all) know enough about both approaches to believe
that they both have merits, and it's up to us to figure out what each
child needs in each area.
But keep in my mind that this list is unique because we are talking
about combining two very different schools of thought in psychology:
developmentalism and behaviorism. It's only natural that much tension
arises when trying to combine the two in practice. It's all work in
progress and the discussions inevitably reflect that.
I speak for myself only when I say that while I like both approaches
and have studied both of them fairly intensively on my own, I still
believe that RDI is experimental. The developmental literature on
which RDI is based may be thorough research, but the way it's put
together to be applied to "autism" is experimental. Gutstein himself
is revising some of the premises that his early RDI program was based
on. Some of those premises are problematic when it comes to autism
and he's aware of that. I applaud him for trying to improve his
method (I just hope I had better access to it).
For example: one huge assumption was/is about flexibility.
Flexibility was the cornerstone of the old program. Why? Because he
started thinking about autism with aspie adults (who are very verbal,
with average to high static intelligence and who generally have huge
OCD problems) and is now working his way back to lower functioning,
very young, non-verbal, and quite frankly non-OCD kiddos.
Another premise was that socialization is the main issue with autism.
Well, turns out that learning disability is just as much a problem
and the connection between them is not that obvious (i.e., make them
more social and they'll learn better or vice versa) and he's working
on that now too.
Yes, ABA is evolving too, but the basic premises do not change. Since
it was my quote that you quoted, I wanted to clarify what I meant
when I said "evidence-driven." I started this whole ABA plus RDI
thing with tremendous enthusiasm, but I'm afraid I stumbled on
roadblocks, problems, and tensions. This is the only list where I can
talk about that. I don't even dare mentioning ABA on RDI-only lists,
where, oddly, there seems to be no tension, no frustration, just
happy results. More power to those parents, but that hasn't been my
experience (yet).
Beti
I have referenced the part of Dema's reply below which I felt echoed
our experience. I am a parent of a boy who is 6 who started with ABA
and then we moved on to RDI. In my son's case, he really needed
both. He has some serious deficits all around. ABA helped him be
able to attend better among other things but was not anywhere close
to a miracle. ABA was, for us, a very negative experience. It was
always about what we needed to work on, his deficits. With RDI our
son does now walk with us and stay right by us instead of wandering
off. It is fun to enjoy our interactions and marvel at the
improvements as they come. Yet, our son still needs a lot of help
with learning, language and other things.
Hi Dema,

Congratulations on completing your certification, it is a great
accomplishment.
I came to this list in late 2005 or early 2006 not long after my son,
Tim, who was then 3 years old was diagnosed. I was very, very
interested in RDI. I went to the website, I bought and read the
book, I bought and viewed the DVD. I started doing some of the very
basic activities with my son. I saw results and changes in my son
immediately. Just using declarative language and working on little
lifestyle things with regards to referencing made a big difference.
I tried to sign up for a workshop but had difficulty getting the
Connections Center folks to respond to emails and phone calls. While
I was doing all these things I enrolled my son in a wrap around
service that provided him with 23 hours of in home therapy. That
therapy was primarily ABA. It was the kind of ABA that involved some
discrete trial activities but so much more. Tim's therapists were
very open to also using mostly declarative language and working on
some things in a way that was compatible with RDI. As time went on,
my son continued to make tremendous progress. So much progress that
I began to wonder if it was worth it to invest $2000-$4000 into the
parent conference in addition to $2000 for an RDA and up to $10000 for
a years worth of RDI consulting services. I finally decided it was
not. I got great ideas for activities from the RDI email list and
other sources.

Now we are in the middle 2007. My son makes great conversation. He
was able to attend a typical preschool last school year with and
aid. He attended typical vacation bible school, and a typical day
camp this summer. He will be 5 in September and will attend one
more year of preschool (this time without the aid). He has wonderful
conversation skills. He gets along tremendously with adults, he gets
along well with his peers. His main issue now is flexibility. When
he has an issue like "we have to drive on THAT road", I can explain
him "well, I go on this road because it will get us home faster". He
accepts it, he doesn't like it, but he accepts it. Tim had a ball and
a baby wanted to play with it. Tim was upset said "he can't play
with it because he's a baby". I calmly got down to his level and
said "his dad say it's ok. You're not playing with it, so it's ok".
He was still a troubled by it and said again "he can't play with it,
because he's a baby", but he processed what I said and let the issue
go. I don't believe he is cured or that social issues will be easy
for him, but he is almost indistinguishable from his peers. That is
why he is being discharged from his wrap around service in the
fall.

One thing that disturbed me about RDI and it's advocates was their
effort and advice to discourage the use of ABA. Comments like

What I am finding in my RDI work is that kids who have had a lot of
ABA are the most difficult to work with on RDI activities...either they
regard interactions as "work" and will stay and do what they perceive
to be a task for only very short periods of time, then decide the
"work" is over, so it's time to return to whatever they do on their
own, or they are hyper-verbal, but mostly with scripts, not
spontaneous reciprocal communication. The parents who talk to their
children a lot are not having conversations, but are telling them...
prompting them...on what to do. There is no conversing going on about
the weather, how school was, what they are feeling,etc.

I know that you qualified with "that's just my experience", but the
message that you communicated is that your professional experience has
shown that ABA has somehow been detrimental to these children. I
think RDI consultants would be better received if the message "ABA is
bad" wasn't a part of their message. I'm not sure why they feel the
need to do this. There is a very real possibility that the children
you are seeing were not helped by ABA, maybe they didn't have a good
ABA program or it just wasn't right for them. If a child has a good
experience with ABA and makes great progress, you obviously are not
likely to see them as clients. If ABA is doing wonders for them, why
would they seek out RDI? That has been my experience. I was very
interested in RDI but found that I really didn't need to spend the
money, because my son did so well with the few concepts I've been able
to learn on my own and his excellent ABA program. The ABA program
was paid for by the state.

Which brings us to the research problem. If RDI wants to be
mainstream, there needs to be peer reviewed, non-biased research
studies showing it's effectiveness. Government agencies and insurance
companies are not going to fund it just because Dr. G says he based it
on neurotypical development and we all know neurotypical development
works. If the government agencies and insurance companies don't
help fund it and parents can't afford it out of pocket, then it just
not accessible. I don't think that Dr. G's recent efforts to make it
more proprietary are going to help either. I think this is a real
shame. RDI is full of great ideas and something that could help a
huge number of families. I think it can help in a more cost
effective way than most other therapies.

Terry

It's a legitimate question to ask why this list is not drawing more
RDI participation. I would love to have more RDI parents talk about
their experiences of how they combine(d) RDI and ABA.

Frankly I'm not interested in ABA bashing here, since that's done
sufficiently on RDI-only lists. RDI is not treated here the same way.
Far from it, we all want to hear more about it. And if some may sound
reluctant or suspicious, that's because of critical thinking, not of
preconceived notions. On the ground too, there's more embracing of
RDI by ABA therapists than ABA by RDI consultants.

Why doesn't this list attract more RDI participation? The answer in
my humble opinion lies in Dr G's ABA-bashing, which, from what I
hear, seems to be getting worse. It affects parents and consultants
in training alike. It's misleading and unfair. I agree with Terry
that it's a great disservice to ASD children to encourage their
parents to abandon ABA and replace with RDI *alone*.

I'm also a bit tired if hearing that "RDI is a lifestyle," and this
argument is used to justify the supposed reason why it has to
encompass an entire range of things we do with our children...There
is so many things problematic with this claim, IMO, that it would
make an entirely separate discussion topic.

Why aren't more RDI families participating here? Because they're not
ABA-friendly. Why am I drifting, despite my best intentions, from
RDI? Not because I'm RDI-unfriendly, but because I haven't yet found
a consultant whose whose ABA-friendly enough (read: who hasn't been
thoroughly brainwashed by Dr G yet to take up the challenge of
working with my ABA supervisor). This is the gist of the problem and
it pisses me off.

Beti

I'm going to jump back in on this as well.

Hi Dema,

I was likely one of the ones most outspoken about Laura DeAngelo's
thoughtful responses. And even at that time, I tried to state that I
never had a problem with her posting or her desire to share RDI
concepts. In fact, I particularly stated that I was glad that she was
an active member of the group and currently wish she was still around.
The problem I had was that she seemed to be incapable of putting 10
words together about RDI without overtly but inacurately denigrating
ABA in the process. If an intervention is to be respected and desired,
it needs to be able to stand on its own and offer real world answers
to real world problems. It cannot just be called "better than ABA" and
trusted based on that. It has to have a reason why it is better and
that reason needs to be explainable both in words and graphs.

The issue with RDI on this group (and I have been a member since
Juliet started it) is not that RDI is not accepted or even poorly
received by "ABA people." In fact, when real and useful information is
shared about RDI intervention techniques, goals, and protocols, I have
found everyone to be very forthcoming with appreciation and a desire
to explore the ideas in their own programs. But, what tends to ground
this list to a halt is when the procedures are not really talked about
and explained in relation to what they are and do. Instead, there is
just this consistent montra that it is better than ABA due to ABA's
inability to... (fill in the blank).

The truth is, I cannot stand people telling others that I am not
capable of reaching certain types of goals simply because my
intervention is based on the behavioral principles (at least unless
they have met me and have an actual clue as to what I am programming).
When in actuality, I know I am using the behavioral principles and
research based teaching techniques with excellent success virtually
every day. In our ABA/VB programs we are creating flexible thinkers.
We never teach children scripted language, and we fade prompts as fast
as we offer them. Our programs are taught loosely and generalized from
the beginning with the use of naturally occurring socially paired
reinforcement. And, as much as my mom might thinks so, I am not
special in this. This is what any good Behavior Analyst, that is up
to date with the latest research, will be doing as well. In fact, many
if not most of the things, "RDI-only" people try to attribute to ABA
is only ever seen in the 1970's videos of truly traditional and
outdated forms of ABA or from stories of ABA programs that are likely
not run by behavior analysts but instead headed by special ed.
teachers who were forced to go to a 2 week ABA course so that the
school district can stop having to pay for legitimate ABA or ABA/VB
services.

What I am sure Juliet wanted (and still wants) with this group is for
people to share the procedures and techniques they have used to help
their children gain better access to the social world, be they RDI,
ABA, VB, or LMNOP. However, when there is a specific question such
as, "what do I do when ______ happens." Even if the blank is filled
by a novel situation, I can usually come up with some viable options
to share simply by applying the proven principles of behavior to this
novel situation.

The question we were asking (that prompted your email) was, "what
would an RDI consultant tell a family to do about a similar
situation." Can those ideas offer us an insight we might not already
have and add to the support of our children? I would hope yes, but 9
times out of 10 these answers or ideas are not forthcoming. Except for
the occasional restatement of the basic party lines. "You need to have
an RDI lifestyle, you need develop a master/apprentice relationship."
"You need to stop prompting, stop expecting an answer, you need to use
declarative language, and you need to create a flexible thinker by
programming in productive uncertainty." These ideas are all nice but
they do not answer the question "what do I do when _____ happens."
What these party line answers begin to read like to me is.... "You
need to believe that if you stop your ABA program, hire an RDI
certified consultant, and pay for an RDA, the answers you seek will
find you, just trust me."

I hope you understand that I fully accept the idea that RDI has
valuable insights that should be included in many if not most autism
intervention programs. My chapter on ABA/VB and RDI states just
that. But, I have three extremely large frustrations with the current
culture surrounding RDI. One, is the idea that the concept of RDI,
needs to be hoarded and protected (for any reason other than financial
gain of the developers). Two, that it is truly a research based
program (because at this point in time it most certainly is not). And
three, that those who are meant to be true followers of RDI need to
push others away from ABA by describing RDI, not in terms of what it
is and does, but rather by simply saying "RDI does many things that
ABA cannot."

The thing that this group (ABAplusRDI) is supposed to offer is a real
look at RDI and ABA. This is something that I hold out hope it will
continue to do in a way that the RDI groups cannot. The problem with
the main RDI groups is that they are all run and controlled by the
Connections Center or their strict followers. And it is clear that
anything that is critical of RDI or even seen as being less than
overly optimistic about RDI is immediately wiped from the record
before anyone might see it and become unnecessarily confused by it.

So, is this group perfect, No. Is it an RDI group, No. Is it an ABA
group, No. What it is (and I think should be) is a group of people
who care about kids and want to help them with all the valuable
insights and ideas that are out there. Are there going to be flare
ups and disagreements, of course. But, just because I am (on
occasion) critical or questioning of DR. G. and some of the mantras of
RDI, it does not mean that I am an RDI basher. In fact the opposite
is true. I know that there is merit within RDI and have written so,
but I am just having such a frustrating time getting to that merit
because I am not willing to sell out an intervention (ABA) that has
already proven itself to have value and merit as well.

My hope is that families can come to this group to get answers as to
specifically how RDI can be a useful addition to (not replacement to)
the current proven autism interventions available to them. I am pretty
sure that Juliet was hoping for this as well when she asked what an
RDI consultant would do about a child who is purposely banging his
head whenever he is not getting what he wants. I don't want to put you
(or the other RDI consultants or consultants in training in this
group) on the spot, but do you have any thoughts that might help with
this specific problem? Although, I have already explained how I would
normally approach it, I would certainly welcome and appreciate a
different perspective serious issue that often displayed by children
on the spectrum.

Robert
_________________________________

Hi group,
We are doing both as we need both. While I do not send in posts
often,
I do go on the group almost daily. I can not understand how anyone
can
suggest any one therapy is a cure all for most children with autism -
if only it was that easy!

I appreciate and learn so much from the various perspectives and
experiences expressed. It is this diversity that supports our
'problem-
solving' approach to my child's autism. I believe the emphasis should
not be on the therapy but on the child - what in the arsenal of
autism
therapies/approaches/strategies /remediation/will address best little
Johnny's deficets.

I truly hope that parents, therapist, consultants and everyone will
continue to participate in what has been a super resource for me!

Margaret
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Hi All,

In response to The question we were asking (that prompted your email)
was, "what would an RDI consultant tell a family to do about a
similar situation."

Our RDI Consultant/ABA Therapist, believes that my son was knocking
his head on purpose in seeking for our attention, and trying to get
in his own way. At the same time, he was very frustrated from
struggling with my husband physically. Her advice was to prevent such
melt down as I can tell when he is going to knock his head on
purpose. She also advised that we start teaching my son breathing
method to help him relax, and lots of cuddling to calm him down and
explain to him about the reason why he needs to complian.

And we did what she suggested. However, the head banging become more
often during the following 2 weeks, which I know later that it was
mostly because we were rushing him too much and he was having
itchiness behind his lower lips that irritated him a bit, plus we
were very stressed up from unfortunate incidents from his kinder that
we need to deal with. Our RDI Consultant/ABA Theraphist spent a lot
of time helping us and dealing with kinder as well. That's why I did
not want to burden her further and started searching for solution
myself through reading ABA books and seeking help from this group.

I am a new member in this group, have been using RDI for nearly a
year and just started ABA. I find this group very helpful. I find
Robert's advise ABA. I find our RDI Consultant/ABA Therapist's method
RDI. The solution, which works, seem to be the same.

I am a mom who is trying to help my son the best way I can. I AM
EXPERT OF NONE. I can only tell based on experience which is not a
complete picture of RDI, nor ABA. My son has improved a lot through
one year of RDI, and I am starting to see him improve through ABA as
well.

Some of ABA principals do contradict with RDI. So instead of looking
at the differences, we just choose what works better for my son. It
hasn't been a difficult choice so far.

God bless,
Belinda
Hello,
I am not an expert, just a parent of an ASD child, who is looking for
every opportunity to learn more and help my child. In the process, I
have learned about a whole community of incredible people doing
incredible work.
I am really glad that Dema brought up this topic because there have
been some thoughtful responses. I keep hoping that through
conversations and shared experiences there can eventually be a meeting
of minds between RDI and ABA, which is why I read this board.
Unfortunately, as some have already noted here, The Connections Center
is becoming more insular and less open to combining approaches, which
is a shame, because RDI has so much to offer.
I have said so here before -- I believe there is an underlying
implicit use of ABA principles in a lot of the RDI approach -- that is
to say, desired actions are strongly reinforced. The reinforcers are
just not called "reinforcers" in RDI and they are more intangible
(i.e. enjoying an activity, sense of accomplishment, the pleasure of
an emotional connection, positive "mentor" (aka teacher in ABA lingo)
response). I think the suggestions by RDI regarding how to interact
with one's child in daily living as well as how to use everyday
activities as opportunities for learning and experience sharing are
brilliant. I think the issues that RDI focuses on in its practice are
especially important and often difficult to overcome in ASD children,
and RDI has come up with some truly innovative ways to address them.
I believe the umbrella field of ABA can learn (and has already
learned) a lot from developmental approaches like RDI. Verbal Behavior
is a very good example of the more flexible and "naturalistic"
approach that ABA has turned toward in its practical applications, and
Robert Schramm's excellent book (which I have just read) provides a
superb and very usable explanation of VB as well as of how ABA has
incorporated other approaches like RDI, and it is an excellent
illustration of how ABA has evolved. The arrogant "we-are-the-only-
scientifically-proven-way" attitude of the ABA community is
diminishing, in part because the field is so large and because so many
participants/professionals are truly motivated by their desire to help
people on the Spectrum.
I hope this board can continue to help build bridges and find new and
better ways to help the autism community.
Sue Laizik
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HI all,

This seems to be a group of professionalsmany who follow and
contribute to research.
I do apreciate that. However my n=1. Having a n=1 means I cannot fail.
I have no big answers just little and special experiences to share.
But to someone somewhere what I have to offer might be a small key.

The way I see it is that I will try to use any ideas that fit my
child.

We have had ABA more lovas type based on trying to match developmental
milestones, age appropriate skills and knowledge. We incorporate play
into almost everything we do. We will use anything from Montasori to
Mickey Mouse. We rely heavily on sensory integration theory as I have
a sensory seaker child that thrives on movement.

My child does stay with me at the store and wakes me up in the morning
to snuggle and play pillow fight. He is very engaged in his world. And
has friends that ask to come to play. He is still developmentaly
delayed in areas. The definition that I work off of is that autism
causes delayed and disorganized devleopment in all area's. The best we
can do is to present opportunities for growth in a organized manner so
he may overcome his inate disorganization and narrow the develpmental
gap.

We are starting the RDI process with some reservations based on my
immpression of Dr G. I liked his book. But my impression from his
video was "Geeze the guy is in love with himself." It bothers me that
he doesn't give credit to others in the autism field and acts as if
his answers are THE ANSWERS. Classic car salesman. Even with that
impression I respect the opinions of the mothers and fathers that have
used RDI. Based on their impressions we are intitating a RDI program.

In my limited experience I have never been promised recovery. I have
been given hope that hard work will yeild improvement. I know parents
who are using ABA, then moved to RDI have tried special schools, the
sunshine program and biomedical with a still sevely affected child.
Nothing works for everyone. Some things work for most and many things
are worth trying. If the concepts are sound behind the idea then it is
worth considering.

I apreciate this groups experience and willingness to work, offer help
and advice. I hope in some way to contribute also.

Chris
I post to a forum where many adult autistics speakabout their
experiences. I asked for input on tellingchildren about their dx and
am going to share here ith their permission. This is a reply from Arak
who is very articulate adult autistic from this group.
I found out about it when I was 13...and I'm not sure my parents were
willing to tell me.While I was growing up, my mother always used to
say I was "sick" or "handicapped" when I was small but that I was
"cured" and all that. She would never say what it was, so I
immediately thought of being crippled (since handicapped signs always
have the little guy in the wheelchair logo). I had read in my baby
book that I had club foot at one point and had to wear special shoes
for awhile, so I thought that was what she was talking about. Autism
was not mentioned anywhere. Even at school, my files said "may have
seizures" under the "any medical conditions we need to know about"
section, but that was it. My parents often met with teachers for hours
on end but I always thought they were discussing how badly I was being
bullied. Clearly, they did not want me knowing what it was. Mum held
a Tupperware party at the house when I was 13 and a woman who used to
babysit me was there telling all these stories about the weird things
I used to do. I asked her what the heck she was talking about and she
said "Well, you're autistic..."I looked at Mum and said "What is this
woman going on about? Autistic? What's that?" Mum muttered something
about me once being autistic but I was one out of very few people who
were cured, so not to worry about it. (This is before I knew that
autism is a lifelong thing) It was around that time that I began
getting very heavily into psychology and had amassed quite the
collection of textbooks that I used to buy at the used bookstore I
worked at. This was back in the 80's when still not much was known
here about it.I looked up autism and decided that I couldn't possibly
be autistic. The books described the "Kanner classic" form of autism:
not talking, playing by oneself in a corner (there was pictures of
autistic kids in a room ignoring each other), being severely disabled,
etc. Well, I was talking, walking, going to school and bowling on
weekends with friends. How could I possibly be autistic?? Maybe I was
as a kid, but at that point, I was nothing like those kids, so maybe
Mum was right? You see, after the age of about 4, I grew up living a
"normal" life. I went to normal school, got no special treatment at
home (except that my parents gave me my own space because they were
always at work), I made few friends, but the ones I did have liked me
for who I was...quirks and all! The expectations placed on me seemed
to be the same that any other kid gets placed on them...I was to well
at school, look into a career, learn how to get along in life and even
date.Being an artist and musician, I had always thought that I was
just "eccentric" and "moody" like other artists and such. Sure, I
obsessed over some topics and it made me feel good to do so. Was that
so wrong? I saw many NT's and such obsessing over certain things in
their lives, so I really saw myself as no different, and my parents
never made me feel different. I never would have made the connection
between autism and who I was at the time had I not been told. Then I
got to thinking...what would it have been like had my parents told me?
What if I had been raised with the autism label over my head? What if
I was treated like some poor disabled kid with no future? What if my
parents kept making excuses for me by saying "She's autistic...there's
nothing we can do about it" when I misbehaved or acted out? Where
would I be today? Would I have just written myself off as not being
able to succeed, so why try? Would I be living off the system? Would I
have bothered with working, meeting people, volunteering, etc.? Would
I need help from an aide for the rest of my life? Would I be happy?
Turns out that when I officially found out at the age of 13, I
immediately went out and got a job (It was close to Summer vacation at
school). I had read the prognosis in those outdated psych textbooks
and decided for myself that I was going to work, I was not going to be
dependent on anyone and I was not going to end up like those kids. On
one hand, I would have understood myself better ..why the sounds were
loud, why the smells were strong (that no one else could smell), why I
couldn't feel external pain, why my tolerance to foods kept changing
and why I got so stressed out after a day at school or when I was
around large groups of people. I would have recognized my limits.At
13, I was old enough and had lived enough to know what I was actually
capable of. I was fiercely independent and very keen in maintaining
that independence throughout my life. I had come this far, why stop
now? "Go hard or go home", right? That was my attitude all the way
through high school and college and I found myself quite ill on a
frequent basis...every few years or so. It never occurred to me that I
may have been pushing myself too hard to fit in and be normal. I
didn't even realize how good of an act I was putting on. (All that
programming done when I was a toddler must have done that) I thought I
was normal...but couldn't figure out why I was melting down so much as
I got older. My illness in 1999 put the brakes on a lot of things and
a lot of things came out that I had not done in a very long time:
flapping, retreating, being afraid toleave the house, not being able
to speak for long periods of time (tongue tied), not wanting to speak
or do anything for long periods of time, being very hypersensitive to
every sensory thing...I was a mess. What was happening to me?? My
mother and I talked a few times on the phone and she said "Oh
God...you've become autistic again...they warned me that this might
happen when you moved out on your own!" Autistic again?? While I was
recovering from my illness that I met Tom Smith (yeah...that guy) in a
chat room. I mentioned that I had been diagnosed with autism at the
age of 2, but I was ok now (well...kind of). He invited me to join his
Autism List and I did. It was there that I began making the
connection. There were other autistic adults on the list, as well as
parents and such. They all seemed to be communicating quite well
online, so I asked the question: Can autism be cured? That's when I
learned it cannot be cured and I was asked how I was treated for it
when I was first diagnosed. I had found out from my parents that I had
been at Margaret House in Calgary and that they used Lovaas method
treatment there. My parents have told me that they have blocked out a
lot of those years and I think they were living on the hope that I was
cured and that I'd never find out. They didn't want to deal with it
anymore. I was told about how Lovaas style therapy (ABA) works and it
brought back a lot of memories that I had blocked out. I remembered
how, at the age of 19, I had responded to an ad in the paper from
Margaret House who was looking for support staff. I remember nearly
having a panic attack when I saw the name of the place in the ad. Why
was I freaking out? Looking at what was told to me on the list, it all
flooded back and it was not a good memory either. I remember my mother
threatening to take me back there a few times when I was a kid, and I
remembered screaming and crying that I'd be good and not to take me
there again. On that list, I saw a variety of people, all with their
own talents and challenges and I learned that autism is a spectrum and
that I was likely on the higher functioning end of it. Some folks
mentioned stomach problems similar to mine; others mentioned anxiety,
which was something I have always struggled with. Looking at how folks
were bullied in school, how they had a hard time relating to other
kids, had some sensory issues, etc., I saw a lot of myself there and
realized that I was in this for the long haul. I knew why I behaved
the way I did when I was really ill. I couldn't act anymore. All of
those coping behaviours had been suppressed for so long that, at my
weakest point in life, when I couldn't put on the act anymore, they
naturally came through. It was then that I realized that I had been
putting up such a strong front that I didn't know how much effort I
needed to put into it on a daily basis. When the walls came down, in
the metaphorical sense, I was left with just myself in all my glory,
behaviours and all. My 'mask' had fallen off and I wasn't sure what to
do. I was left looking at who I really was, not who I was pretending
to be. Why hadn't my parents told me? On the other hand, knowing me, I
likely would have given up on life too had I grown up with this
knowledge. I may have written myself off. When I thought I was just a
weird teenager, I was happy to keep working towards what I wanted to
be. Had I always known I was "disabled", I might not have tried as
hard because someone else would do it for me. I might have gotten
really depressed and thought I was useless and incapable. Sometimes,
when things are bad, I wish my parents would have just followed the
recommendations of those doctors in 1978 to just put me away in an
institution. Then, I look at those who have been there and I thank God
that I did not have to go down that road in life. Now, I've made peace
with who I am and I know my limits. Yes, I put on the act every day
when I leave the house to go to work, but I let it slip off at nights
and I'll happily space out or pursue a perseveration to relax myself.
I take more control over my situations, including saying "no" when I'm
too stressed out. I've taken charge of my life and have found methods
of dealing with those years when I am in a constant state of anxiety,
hypersensitivity, etc. I know to leave my office, go outside with my
cell phone and call someone who can help take my mind off things. It
doesn't make it any better, or make it go away, but at least I am
learning how to care for myself when I need it most...and I know how
to ask for help. I know where to seek it. And, yes, I push myself
because I know what I can do. I know my potential and i know my
limits. I've done it this long, I'm not quitting or giving up on
myself now. So...what about other kids and parents? How to broach the
subject? I'm not sure what I would do since I'm not having children. I
would probably tell my child as soon as he or she is old enough so
that he/she would understand why he/she is different from the other
kids. I would explain what autism is and perhaps discuss with my child
what his/her limits are. What is he/she sensitive to? Does he or she
feel sick a lot like I do, or is there something else that they deal
with that I don't? How does autism manifest itself for him/her? What
does he/she like? What bothers him/her? I would explain that these
things are likely a part of autism and to accept that those
limitations are there. Nothing to be ashamed of. I would use plain,
logical language to explain things and help my child empower him/
herself over time. I would have my child know that they can come to me
when things are getting bad and that he/she doesn't need to act normal
around me, make eye contact when he/she doesn't want to and that I
will give him/her the space needed to live and pursue his/her life. My
child would know that I would stand up for him/her, fight for him/her,
advocate for him/ her, but that I would not make excuses for him/her
and not allow him/her to write him/herself off because others do it. I
would also explain that all non-autistic people have their limitations
too. Blind people can't drive, deaf people can't listen to music the
same way we do. Diabetic people have to watch what they eat and follow
a regimen of medications and such. Some NT's have very short attention
spans while others have a hard time dealing with stress...or have
problems with bad backs, limbs, etc. Nobody is perfect and no one
expects us all to be perfect anyway...it's unfeasible! I would see if
we could work out some sort of way to deal with when the stress is too
high. Teach them to know when they are getting near the limit...like a
thermometer perhaps if the child is good with association. See stress
level like the red stuff in the thermometer...when it goes up to a
certain point, stress levels are going up and to tell me so I can be
supportive or work on a relaxation technique, etc. I would find ways
to teach my child how to handle stress and help him/her make up fun
ways to deal with stress or communicate it...even if it's just a hand
signal or a way of tugging my shirt or holding my hand. Even a certain
phrase or facial expression that only we know. I would want my child
to know that I understand and that we can connect in whatever way is
best for the child. (Dad and I used to make faces at each other as a
bonding thing) On the other hand, I would also tell my child not to
give up on him/her self, but to do what many take a long time to
learn: capitalize on your strengths and learn to cope or ask for help
with the weaknesses.What is he/she strong at? How can she/he use those
strengths? How can he/she use those strengths to do what he/she wants
in life? What sort of plan can we make together to help make it
happen? I would say the same thing my father told me: "You can do
anything you want if you are willing and able to put in the effort and
work required to put into it". Perhaps I'm just a big dreamer, but
that is how I would have liked it done for me if my parents had told
when I was very young. I lucked out because I had already discovered
my potential and was well on my way to stablishing myself when I found
out. Best of luck to the parents on the list and I hope I was able to
provide something useful. :^)
Dorothy

Hi Dema and All,

I wrote a response to you last night but thought it too technical,
of my sense of things... and thought better of sending it, thereof.
I will include it as a Genetext, track, of science, in my terms,
below.. .

We who communicate as Individuals define the best that there is for
making the most of other Individuals. Call it enhancing the
Individuals that exist, towards making the most of us as a group,
thereof? .. .

An elaboration on my GUT feeling/s.. . which may have triggered
your, presence? .. . (Glavic's Understanding Test)

Ask yourself, for All the results you could possibly get? towards
bringing ABA and RDI together? towards bringing all of everyone and
everything together? .. .

1.) Is it communicating? (Intelligent answers are appreciated.;)

2.) What is it communicating? (Of interests, of feelings, of needs?)

3.) How are you responding to that? ...

4.) How are you validating that? ...

5.) How are you sharing and "inventing" of that, for a greater
understanding of more? of our purpose, as Individuals, as for the
group, thereof? .. .

Assume the English/official/common language is "not" the only way
things are being communicated.. . and that we should, I Feel, be
about inventing/synthesizing the better means of communication,
thereof, between each other, despite what any "authority" otherwise
(not of reason?) would say, in rejecting or extinguishing that,
of "Communication"

Those who communicate make this the (better) group of what we are
all about, and that's pretty plain and easy to see.. .;=). I "more"
than hope, (and now you too, Dema, I more than hope) thereof, of
what links/connects "everything," never mind only ABA and RDI

I have a name for those who are formal language teachers (etc.) not
so much for nurturing the Individual, of Reason and Communication,
thereof, for all that students as Individuals can be, thereof, which
I will keep to myself at this point, (;) but which I am sure you can
all or most of you come up for your selves, thereof.

Cheers,

Mike,
Hi,

I too wish the list focused more on how folks are overcoming Autism
using either or both ABA and RDI and less on attacks of either
program. I guess folks have to vent but it does feel like this list
becomes an RDI bashing site alot and has little ABA or RDI content.

I've done only a little format DTT type treatment and almost three
years of RDI first without and then with a consultant. I was talked
out of a DTT program when my guy was 3 and when I tried again at 6
years old, I was told he was too old. I know ABA can be much more and
I think we do have a home adapted ABA program that has worked
reasonably well. But I miss having some kind of personal coach for
the ABA.

What I like about RDI is that it is organized. I know how to get
resources. But most important, it has made my son interested in other
people. He is more aware of his behavior and now wants to have friends
and connect with others. He is more flexible (though still has a ways
to go), makes true eye contact, notices how others feeling and really
picks on non-verbals.

I am on this list because I think he also needs to work on specific
personal skills, academics and other areas that DTT or other ABA
approaches might be more appropriate for.

I think both programs have a lot to offer. As for RDI being
inaccessible, forgive my ignorance but is there actually one
comprehensive ABA site for parents? I know there's a lot out there
but it's pretty scattered. If there is such a site, wonderful.
Please share it.

I definitely have my problems with RDI, but you can do it on your
own. If you choose the consultant route, which I did, you get a coach
who can help you out of the slumps, let you know when to move on to a
new skills, offer a suggestion and an objective review. You pay a lot
of all that but personally I need it. I'm just not motivated,
energetic or creative enough to do it on my own. For those with that
kind of energy, I think there are enough resources out there to make
real progress with RDI. As for RDI costing money, well, I don't work
for free so I don't expect anyone else to either.

I'll close by saying I don't know what I would do without the
Internet. It is my lifeline, my library, my sanity in the endless
quest to help my son. Thank you to all who do more than read these
email lists, who take the time to write and respond.

I'll try to comment more on RDI is I see questions on how it can help
in a specific situation. I'm glad to share ideas and tips.

Melody in Maryland
Melody,

Interestingly, what you find criticism, I find critical and
enlightened discussion. If you like the way the discussions were
heading--problem solving without care to the methods--we will be glad
to keep those going. Keep posting your problems. We are a generous
group. It will be less likely you will hear RDI mentioned, however, as
it doesn't address most of the problems that people are bringing up.
My original post questioned why so few people were mentioning anything
to do with RDI. I was trying to encourage posting from the RDI
perspective. I think we have adequately covered why RDI doesn't come
up when discussing behavioral problems. I suppose we'll have to wait
for someone to post a social skills problem for an RDI solution to be
suggested as a remedy. Just to come to that conclusion in a
scientifically based community is worth analysis. And that is what I
have been getting out of the discussions. Good analysis. I don't think
that a critical reader of this list would come to any other conclusion
than that we respect RDI here. We just hold it in a place that doesn't
put it at the center of an autism intervention. I don't think it has
proven to be a core treatment of a core deficit--there are too many
global learning, physical and developmental issues in autism to
rationalize without evidence that an intervention dealing only with
social communication would adequately address most problems for a
majority of children. I wouldn't hesitate to say that we all respect
it as a healthy adjunct to keep practitioners (notice I did not say
children with autism) focused on a higher level of communication--
experience sharing-- and flexibility. I have yet to see that it does
more than that. That is the crux of disappointment of some people of
this list. We respect RDI. We don't find it to be the Holy Grail. We
want to use RDI, and have found, like yourself, that it can be done at
home, no consultant, no fancy program steps. Most people here don't
see the need for the new (or even old) levels and balk at charging
outrageous prices for a contrived and changing heirarchy of goals when
it seems the whole program can be run effectively knowing these three
things: slow down, avoid directive communication, and be flexible.
Some examples are helpful to get started. I don't think RDI needs to
be more complicated than that, or more expensive. Those are GREAT and
POWERFUL tools. They aren't worth thousands of dollars per year. That
is why I think RDI will stay fringe--and why Dr. G is working so hard
to make it exclusive. It will be integrated into common sense
treatment of autism. What a wonderful thing he has done for autism
education! The cynicism comes from the attempt to make it more than it
is, and wring parent's pockets dry for it. Not from a lack of respect
for the contributions of Dr. G. I am afraid if you want to continue to
have access to the wonderful minds that so carefully and analytically
consider every parent's question about the problems they have with
their learners, you are going to have to respect that some of those
wonderful, experienced and enlightened persons who know so very much,
put RDI in a much different place for a good reason. I, for one,
wouldn't pay the cost of taking offense at their views. That would be,
in my opinion, the ultimate of all interventions sins, --the common
mistake of putting your allegiance to a program, rather than putting
your child first. I don't know of any child who wouldn't benefit from
the combined experience and advice of Beti, Reg, Bob, even Laura
(could she have stood us). Would that the folks really knowledgeable
in RDI stick around to give advice when their expertise would benefit
someone and not run off all offended when we find that RDI wouldn't
help this one.

One of my patient's called me (and this was a compliment), a "plain
talking heifer." I suppose I am, but it is getting exhausting trying
to protect the sensibilities of the adults when it is and should be
all about the kids. If I hadn't have been banned from RDI lists for
asking critical questions, I would never have started this list. I
would have remained a lurker on RDI lists in spite of the lack of
analytical discussion or respect, just trying to find things that
helped my child. But I couldn't find a level of respect there. And I
certainly couldn't post there from an ABA perspective and have my
input truly valued as we used to value Laura's. Indeed no one has
posted an RDI intervention that I remember that was treated with
anything but excitement and interest. Do not miss the point that we
respect RDI for what it can do. Just do not expect us not to analyze
and discuss what it can not. If it would not purport to be all things,
we wouldn't feel motivated to do that.

Juliet Burk
Sample RDI referencing and coregulation exercises
_--- I wanted to post some ideas for some RDI activities that we are
doing
now and that are working really well for us. As y'all know, there are
tons of examples like these on RDI-only lists, but I wanted to share
ours with you, hoping that they'd be helpful for some and that we
could share more RDI, or ABA+RDI, or RDI+ABA experiences:

1) Referencing during sand play (if your child is a stimmer with
sand, this is a great replacement): Mommy fills the bucket with moist
sand while D is ignoring her. She turns it upside down to make a
castle. Suddenly D is interested and wants to knock it down. Mommy
gently blocks D and waits. D inevitably looks at mommy. The second he
looks mommy nods yes with her head and lets or prompts D to knock
down the castle. D immediately gets it and during the consecutive
trials he waits for mommy's nod (looks at her) w/o mommy having to
block her. When the roles are switched D nods (it's amazing how fast
he gets this rule!) No talking takes place throughout this activity.

2) D loves gum. Mom hides the gum in one of her hands and every time
she gives gum to D she says playfully "I have gum for you. My face
will tell you which hand." D looks at mommy, mommy gives the clue
with her eyes (at the beginning with head too, later only with eyes).

3) D tantrums because he can't have something. Mommy stops all
action, sits, and waits without looking at D. D cries until he
realizes no attention is coming from mommy. The second he stops,
mommy turns head and looks at D. D looks back and mom immediately
nods and smiles while offering an alternative. If D accepts the
alternative that's nice. If not and tantrums again mommy shakes head
dramatically, turns away, stops action and waits. But she doesn't
offer the alternative the second time, until at least 30 minutes
lapse. No talking happens throughout.

4) Coregulation: Mommy gets the tambourine, D gets the drum or vice
versa. The activity first starts with simple imitation (D is prompted
directly at the beginning if necessary, even though RDI doesn't do it
so directly). Mommy hits once, D hits once. Mommy hits twice D hits
twice. Mommy changes the rhythm, D follows. Then Mommy encourages D
to hit the drum once and she does the same simultaneously. (If your
child can count, like mine, then you can give him directions
like "hit twice," so you can do it in tandem him every time. Then
mommy says: "I'll hit twice, you hit twice" and says "ready, set, go"
to try to start it simultaneaously.

This exercise take a looong time to come to full fruition, but I
think it's so important. We're still working on it. One can start
coregulation with different patty cake patterns, taking simultaneous
walking steps (alternating running, walking, stopping, skipping), or
slow dancing, which are easier to do than playing two instruments at
once.

HTH, Beti