[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Mike & Jean]

Due to Spring Break, there will not be a F.E.A.T. meeting in March.

The next F.E.A.T. meeting will be on Monday, April 11th. Details will by posted during the first week of April.

Jean

[Barbara Rodrigues]

Regarding the Dr. Peter Gerhardt conference – I just heard from someone that he will most likely be doing another workshop up here in Vancouver at UBC in October – so for those interested and in terms of cost saving you might want to attend that one. Will post more when confirmed for those interested.

Barbara

[Deleted User]

I share your frustration David. But let me just say to everyone, all the MORE reason to attend workshops such as this in the U.S. We must learn about laws such as those in the U.S. because the onus is on us to force the political powers to create similar laws here. I think we have all learned that no one will save our children just because it is the right thing to do. No, we must force them to do what is right.

Surround yourself with information on what it should be, what it could be. Get frustrated because it will motivate you to say THIS IS NOT GOOD ENOUGH!

As frustrating at it is Non illigitamus carborundum (Don't let the bastards grind you down)

[David Chan]

Hi folks,

First of all I would like to say that it was an awesome conference
on Saturday. Dr. Freeman, Dr. Newman, and Dr. Gerenser. (we
found out she just finished her PhD) were icredible speakers. It
certainly lit a fire under my behind, and also it was a great
reinforcer for our family, after all we are all behaviouralist here.

Having said that, I will move on to my next point.

Thank you DeeDee for posting the info on the FEAT confernce in
Seattle with Dr. Peter Gerhardt. It's quite a coincidence that Dr.
Newman had mentioned Dr. Gerhardt in his talk as well. So I
promptly went to the FEAT of Washington site, and looked up
the conference. the intro read as follows:

"Increasingly, attetion is being paid to needs of learners with
Autism Spectrum disorder (ASD) as they enter adolescences and
grow into adulthoodl. Bouyed by the transition requirements of
IDEA and equal access legislation such as the Americans with
Disabilites Act, professionals, families and learners with ASD are
beginning to reconceptualize the transition process in terns of
personal competence, satisfaction beyond the classroom; and
not simply in terms of vocational training. Where job placement
was once considered desirable, now the goal is career
development. In place of residential placement, we are no
beginning to talk about residential choices in support of qulity
of life"

And it goes on to describe the content of the workshop.

The more I read, the more angry I got. I came to the realization
that for us here in British Columbia going to a workshop is that
discuss issues the above described is simple folly. Why ?
Because we have NO LEGISLATION like the IDEA (indiviuals with
disabilties education act) and the ADA (Americans with
disabilites act) to back up any kind of implementation that we
learn about in that workshop. Let me extend that point further
by saying that attending any kind of workshop and conference is
simply painful to the extreme because you see what is possible,
and you KNOW even if you mortgage the farm to help your kid,
the rest of his world does not have LEGISLATION to support him,
so it is all for nought.

I for one am not a masochist. my life is painful enough not to
have to see what could possibly be done elsewhere.

Yeah, I am pi@*ed, Going to a conference isn't good enough any
more. That's like getting cancer and having some one TELL you
about Chemotherapy, but oh by the way it works really well but
you can't have it.

Oh, Why I can't I have it, because our goverment gives you a
choice and options in treatment.

I honestly think that if we subtitute the neurological disorder of
Autism with Diabetes, or Heart Disease, or Cancer, as a
community we would set our hair on fire. And yet here we have
our children.

What's the point of this rant. Get angry, get excited, I know it's
hard to be politically active while you are running your program
for your kid or kids. It's a lot to ask. Get to a FEAT meeting, go
and get a petition from canadaautism.com. Just get plain
Pi@#ed off, and do something. We need to make LAWS to protect
the most vulnerable in our society, OUR CHILDREN.

Regular folks have NO IDEA of what our families have sacrificed
so that our children would have the proper, science-based
intervention. Well, now is the time.

And for you folks with kids 6 and under. As sure as the sun
rises, that child WILL be 7, then what ?

As for me. Confernces are academic. Our family life is real. We
will as before carry on the good fight.

For all of you fighting the good fight

We shall over come. We have no choice

Dave
Mr. P's Dad

[Mike & Jean]

There are a couple of other parents whose contributions to the success of the Autism Treatment conference that I forgot to recognize in my previous post. Avery Raskin and Nancy Walton, both are long time "veterans" whose contributions to the movement have been and continue to be very significant. Thankyou both! And thankyou to everyone else who are unamed here but work tirelessly in the service of others.

Jean

[Deleted User]

FEAT of Washington

presents

Peter Gerhardt, EdD*

Transition Programming for Adolescents and Adults with ASD

April 23, 2005

9:00am – 4:30pm

University Christian Church

4731 15th Ave. NE (Cor. 15th & 50th)

Seattle, WA

Increasingly, attention is being paid to needs of learners with Autism Spectrum Disorder (ASD) as they enter adolescence and grow into adulthood. Buoyed by the transition requirements of IDEA and equal access legislation such as the Americans with Disabilities Act, professionals, families and learners with ASD are beginning to reconceptualize the transition process in terms of personal competence and satisfaction beyond the classroom; and not simply in terms of vocational training. Where job placement was once considered desirable, now the goal is career development. In place of residential placement, we are now beginning to talk about residential choices in support of quality of life.

This workshop will provide an overview of this movement toward transition planning for competent adulthood. In addition to employment support, attention will be paid to instructional support in the areas of social skills, leisure, sexuality, and quality of life.

*About Peter Gerhardt, Ed.D.

Dr. Gerhardt has over 20 years experience working with learners with autism spectrum disorders (ASD) in educational, vocational and/or community settings. He is the author and co-author of articles and book chapters on the needs of adults with ASD, the school-to-work transition process and analysis and intervention of problematic behavior. He has presented nationally and internationally on these topics.

He is currently in private practice and is the Chairperson of the Scientific Council of the Organization for Applied Research (OAR). He is a member of the Advisory Board of several organizations including QUEST Autism Foundation, Queens Services for the Autism Community (QSAC), NJ Council of Outreach and Services to the Autism Community (COSAC), and the Autism Society of America.

Previously Dr. Gerhardt was the Director of the Nassau Suffolk Services for Autism which operates the Martin C. Barrell School in Levittown, NY. He was also a Research Assistant Professor at the Rutgers University Graduate School of Applied and Professional Psychology with an appointment as the Director of the Division of Transition and Adult Services of the Douglass Developmental Disabilities Center. It was in this capacity that he co-founded the Douglass Group, a social skills and support service for adults with Aspergers Disorder or High Functioning Autism.

Dr. Gerhardt received his doctorate from the Rutgers University Graduate School of Education.

Bonus Speaker (1:00-2:00 PM):

Connie Frenzel, R.N., M.S.

ATP Outreach Coordinator

National Alliance for Autism Research

THE AUTISM TISSUE PROGRAM:FROM HOPE TO PROGRESS IN BRAIN RESEARCH An update on what brain tissue research is revealing about differences in the brain and how these differences relate to behaviors, language disruption, social challenges, seizures and genetics

Connie is the parent of a 17 yr old with autism and brings an extensive public health nursing background and parent advocacy experience to the program. She founded and directed a home health agency, was a clinical professor in public health nursing, and has authored several articles in gerontology and autism journals.

$65 — FEAT Members

$80 — non-FEAT members

Call 206.763.3373 or email the FEAT office featwa@featwa.org for a registration form

or visit the website http://www.featwa.org

– Registration & continental breakfast begins at 8:00am
– Box lunches provided at noon

[Mike & Jean]

Hi everyone! I just wanted to thank all the volunteers who worked so hard to produce and present, "Autism Treatments: What's Science Got to do With it?"

It was a great conference! Our speakers; Sabrina Freeman, Bobby Newman and Joanne Gerenser had great presentations! We had a wonderful turn-out of just over 250 people.

Once again, thankyou to all the volunteers but particularly, Debbie Rees, Andrea Finch, Jennifer Ralph, Eva Lee, Tamara Leger, Marie Gauthier, Jennifer Weatherbee, David Chan. OUr parent panel: Bev Sharpe, Maureen Lundell, Pam Mihic, Michelle Karren, Justin Himelright and Judy Anderson. The "Island Girls – Barb, Yvonne, Megan and the rest; Amy Stevenson, Julie Clemens. There are more but I don't have everyone's names. Thankyou all for making today such a wonderful success!

Jean

[Leah Mumford]

Hi Debbie:

with all the kids that I've worked with, the SLP's and OT's all say counter-clockwise, even though it seems a bit awkward. They say that when kids start writing letters, (e.g., "c" "o" "d"), the round parts are written counter-clockwise to be formed properly.

hope that helps,
Leah

[Debbie]

hello there to all, i am wondering if any can clue me in as to what way a circle should be drawn,should it be clock wise or counter clockwise,,,we want to teach my son one way and the schools seem to do it a different way, what is the protocol,,,,,, i have spoken with my senior about this,,,,,,,so i am just wanting anybody's opinion as to what they have done,,,,and thanx for your help,,,,,
debbie,
dj's mom

[Sabrina Freeman]

Regarding the "Fluency" model of autism
treatment, Dee-Dee Doyle posits that we
should all, "open [our] minds to ABA treatment
and methods supported by single subject
research and all that it can offer our children
with autism."

This view of autism treatment research begs
the question: is single-subject research
design truly a valid means of establishing the
efficacy of an autism treatment for a
population of children with autism, as
opposed to the treatment needs of only a
single child? I thought I'd share some
thoughts on the single-subject case design in
autism treatment, for those of you who may be
interested.

What is a Single-Subject Case Design?

A single-subject research design (SSRD) is
simply an experiment that uses one subject.
I'm certain almost every parent of a child with
autism has seen of or heard of this kind of
design. It is very common in autism research.
Not only is it common amongst the kooks; it is
also very common amongst legitimate
clinicians. In fact, the vast majority of studies
done in the field of applied behavior analysis
are single-subject case designs. In addition,
in rehabilitation research it is used often,
particularly by Occupational Therapists and
Physiotherapists. The reason for this is that
single-subject research is ideally suited when
there is a patient with an injury, for example,
and the treatment plan for the person is
individualized. Remember, in this case, the
goal is to rehabilitate that one patient; the goal
is not to generalize that treatment plan to other
patients, or a population of patients with the
same diagnosis.

Before I explain this kind of research, I need to
let you all know that researchers who do this
type research often feel that they are under
attack from the scientific community, and there
is an ongoing debate as to how this kind of
research should be used. That said, I think it
is fair to say that there is consensus in
science that single-subject research is useful
in a clinical setting, but it's absolutely not
appropriate to generalize from one
single-subject research design to the
population at large, which unfortunately
happens in autism research — a lot!

There are advantages to single-subject
research designs. The first is that the
experimenter uses the person as his own
control by comparing data from before the
treatment, and immediately after the
treatment. This removes all the possible
errors that can flow from random, individual
differences amongst people, since it is the
same person in the study. In fact, this design
typically observes behavior, for example, on
five different occasions before introducing the
treatment. Then, many researchers in SSRD
will use statistical analyses to ensure that
there is a true difference between the before
treatment and after treatment data. Many
researchers don't use statistics to see the
results; they simply look at a graph showing
the data points before and after. Even those
using statistics are criticized because there is
a debate about which statistical tests are
appropriate to use. These researchers claim
that SSRD is actually better because the
internal validity is high. Here they are referring
to the idea that there is no variability between
children in the control and experimental
groups since the control and the treatment are
done on the same person. In other words, as
mentioned above, there is no difference
between children because there is only one
child who is measured before and after.

A hypothetical design example shows a child
who enters treatment for 6 months and then is
given an I.Q. test. Then the child is not given
treatment for a year and his I.Q. is measured.
Then the child goes into treatment for another
6 months and his I.Q. is measured. Then the
child is taken out of treatment for another year
and his I.Q. is again measured. From this
kind of design, one could clearly see whether
the child was benefiting from treatment, and if
the child was regressing when not in
treatment. For that ONE child, it appears as
though treatment is having a very strong effect.
For clinical decisions, the single-subject
design looks very compelling since we are not
generalizing to the population at large; rather,
we are simply making a clinical decision as to
whether that child is benefiting from the
treatment. When single-subject designs are
used in that manner, they do a true service to
the child.

This is particularly true with autistic individuals
with self-injurious behavior. If a clinician uses
techniques to eliminate self-injurious
behavior, do we really care about the fact that
there was only one child in the study?
Obviously not. We care only that this treatment
worked for this individual and has now given
him a life where he is not restrained, but
rather, can go out into the community with his
family. When these kinds of studies are
published, they are incredibly beneficial to
other clinicians as new and valuable tools in
the kit box for use when presented with a
self-injurious client.

SSRD's are also very useful to motivate
different kinds of research to determine
causal relationships. In fact, a small
within-subject design using 2 children actually
motivated Lovaas to do a large-scale
between/within subject design, which became
a very well known experiment published in
1987.

To summarize single subject research
design:

– Study using only 1 child with autism in the
entire study
– Common in autism research
– Useful in a clinical setting
– Controversial research design if used
improperly

What's the Problem with Single-Subject Case
Designs?

There is no problem with the single-subject
design when it is used properly; however, it is
used improperly in autism treatment research
all the time. It is used heavily by quacks
because it is cheap and easy. Quacks only
need to find one child on which to
"experiment," and then a poor single-subject
case design can morph into an anecdote-now
-dressed-up-as-genuine-research.

Another problem amongst some researchers
is that they claim single-subject design can
show that A causes B in general. Under
certain conditions, it's fine to say that a child
improved due to the treatment if proper
measurements have been taken. When this
happens, the "Therapeutic Criterion" or the
treatment value for the subject has been met.
Unfortunately, from that one child, one cannot
make general statements about how effective
the treatment was. This is called the
"Experimental Criterion." The "Experimental
Criterion" has not been met from one or two or
even three experiments. I think it is safe to say
that single-subject designs are one very
valuable way to probe and see if it is
worthwhile to create a between-subjects
experiment with a larger number of children
(as in the Lovaas's research) if indeed we
want to generalize results to the larger
population of children with autism.

Proponents of the single-subject case design
argue that the solution to the generalizability
problem is to do many replications, and in this
way show that the result can be generalized to
the population of children with autism. They
would say that their study is just as good as
between-subject designs in terms of
generalization, as long as both types of
studies can replicate their results.

They are also proponents of meta-analyses.
In a meta-analysis, the researcher combines
the results of a number of single-subject
studies to discern whether a given treatment
is effective. This is difficult to do well, and has
some methodological problems associated
with it, but it is a much better way to add to the
body of knowledge in autism research than
generalizing through only one, single-subject
research design — a definite no-no.

Other critics, such as a researcher by the
name of Furedy, are completely against the
use of this type of design. He says: "The
'single-subject' design (which really denotes a
design that employs too few subjects to allow
statistical inferences concerning significance
to be made) is useful only for the generation,
but not for the testing or evaluation, of
hypotheses concerning any psychological
functions." That's a fancy way of saying that
there are not enough children in the study to
make sure that the effect is real, and that the
proper use of the single subject research
design is to generate interesting ideas to test.

Although we are not going to end the long
running debate regarding the merits of
single-subject designs in autism treatment
any time soon, it is safe to say that there are
too many methodological problems
associated with this type of research design to
rely upon its results as an autism treatment
protocol that can be generalized to the
population at large.

It is my opinion that single-subject designs
are relied upon far too heavily in autism
research–again, often by quacks. The main
point to take away from this discussion is this
(and you can "take this to the bank"): it is not
scientifically valid to generalize any given
autism treatment protocol to the population at
large from a single-subject design. So please
be careful!

Sabrina (Miki's Mom)

[Author]

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