AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Friday January 18, 2002
INDEX:
* A Relationship
Curriculum: A Mother's Perspective
* The Relational Development Program: A Brief Overview
* Journey to Houston
* Autism: a Novel Form of Mercury Poisoning
* Growing Up Is Hard To Do
* How To Enjoy Disney World
******************************
A Relationship Curriculum: A Mother's Perspective
Sherrill Strong, MSSW, CICSW
My delightful, seven-year-old son has Asperger's Syndrome. He is very
social, and I have been concerned about what will happen as he gets older
and the differences between him and "neurotypicals" become more
obvious. I
have been especially concerned because he also has Anxiety Disorder, and
there is a family history of depression on both sides. What will his teen
and young adult years be like? Will he be able to find the social
relationships he will surely want? How much will it devastate him if he
can't? When I hear about young people with PDD's taking their lives, or
suffering from serious depression, I close my eyes, pray for them and their
families, and then pray this will not be my son's future.
Ever since he was diagnosed two years ago, I have looked for something that
could really pinpoint with precision and in detail my son's unique
differences in social communication. Along with that I hoped that we
would
be able to help him improve his ability to have "experience sharing"
even
though I had no name for it then. I don't mean the generic "social
skills"
but much more individualized and much more detailed. I finally found a
book last spring and when I read it I knew I had found the first such model
in my two years of searching. It was like finally quenching a two-year
thirst. There was new hope that my son could learn to understand,
appreciate and experience a depth of relationship that would previously have
been unthinkable.
Dr. Steven Gutstein, and his wife, Dr. Rachelle Sheely, developed this
program. They are clinical psychologists who practice at the Connections
Center Clinic in Houston, Texas. Dr. Gutstein wrote the book,
Autism
Asperger's: Solving the Relationship Puzzle, based on the program. It
contains Dr. Gutstein's thorough review of the relevant literature on how
neurotypical infants and children develop relationship awareness and skills.
It also includes descriptive information about the model and case
descriptions to illustrate how the model works.
The model provides great detail on the building blocks of this relational
development process, breaking it down and organizing it into recognizable
and manageable stages and levels. The model utilizes a detailed assessment
tool to determine specifically where a particular child is currently
functioning. There are activities to engage the child at their starting
level, and additional activities to continue to draw the child into and
through the next levels and stages. He has also developed a set of
objectives that are relevant to the program that can be used in children's
treatment plans and/or IEPs. He will be releasing a book this fall that
contains hundreds of activities they have developed for the various levels
and stages.
I probably made the decision to take my son to Houston as soon as I read the
book. It is an expensive proposition, which made me spend a little time
thinking it over. I did communicate with other parents whose children
have
worked with Dr. Sheely or Dr. Gutstein. I read messages from adults with
Asperger's who said it was "like Dr. Gutstein could read my mind-I didn't
think any NT's could do that." I spoke with professionals here in
Denver
who I respect, and lent the book to other parents and professionals to get
their opinions. The impression was favorable from everyone.
In the end though, it wasn't a decision made because I had "proved"
to
myself that the program would work. It was because I wasn't capable of
not
trying. I knew that if we waited until the program is thoroughly
evaluated
and researched, my son would be too old to reap the full benefit. In the
end I wasn't capable of not taking him. When I confessed to my husband
that
I had made the appointment and paid the initial $900 deposit, I expected him
to be furious that I hadn't discussed it with him first. I told him
honestly that I could live with him being furious if I had to, but I could
not live with myself if we didn't provide this opportunity for our son.
My
husband, wonderful man that he is, understood.
I will share our experience in Houston after we have completed the
evaluation process. Then I will share how we are doing with implementing
the program here in Denver, so far from Houston. I will also share my
experiences as I advocate for this program to be used in Colorado's early
intervention programs and Colorado's schools. I am optimistic, for my son
and for all the children who will benefit from this program.
In terms of potential impact on children with PDD's, this may well be the
most crucial article I write. I know there are no magic cures for PDD's,
and this is only one of many areas in which our children need help. The
area of relational development has been somewhat neglected up until now, and
I want every parent who has a child with PDD (or other diagnoses that
lead
to some degree of social disability) to hear about this model. Then I
hope
those parents will join together to advocate that the program be used in
early intervention programs, all the way through school, all over the world.
Our children stand to benefit tremendously from this innovative model, and I
hope that parents can find ways around the snail's pace of all the various
"systems" we have to deal with. We finally have a marvelous
relationship
curriculum for our children, and they deserve nothing less.
(Autism Asperger's: Solving the Relationship Puzzle was written by Dr.
Steven E. Gutstein and published by Future Horizons. It can be ordered on
the website http://www.connectionscenter.com or from Future Horizons at
1-800-489-0727. It can also be ordered by any local bookstore)
(published in the Autism Society of America - Colorado Chapter's newsletter,
the Quarterly, vol 7, no. 4, 2001. Reprinted with permission)
******************************
The Relational Development Program: A Brief
Overview
Sherrill Strong, MSSW, CICSW
By itself, the failure to initiate joint attention discriminates 80 - 90%
of children with autism from children with other developmental delays.
This
is true regardless of their developmental stage or intellectual level.
Joint attention is one of the major skills developed along the path of
learning experience sharing. Dr. Gutstein has produced a model that
designates six levels to the learning of experience sharing. The first
level is birth to six months and is called Tuning In. The sixth stage is
Binding Ourselves to Others and for neurotypical children, takes place at
about four years of age. The book delineates the levels and stages that
neurotypical children go though from the time they are born as well as
where and how the child on the spectrum follows another road.
The Relational Development process begins with a thorough evaluation that
either provides or confirms a child's' diagnosis and looks for other
relevant issues that need to be addressed. It also involves the
administration of the Relational Development Assessment (RDA). This
assessment pinpoints at what level and what stage of experience sharing, a
child is functioning at the time. From there, activities are prescribed
that will take the child from that level and stage to the next level and
stage. This is the Relational Development Intervention (RDI) process.
Hundreds of these activities are already designed and will be published in a
two-volume set next spring. These activities can be used at home, at school
or at a therapy office. They correlate well with IEP objectives that come
directly from the results of the RDA.
Many of these activities are adapted from the ideas and work of others in
this field, and Dr. Gutstein is quick to give credit. There are
similarities between this program and others, but there are also significant
differences. RDI is based on the learning of experience sharing and pays
most attention to co-regulation, social referencing and the concept of
function before means.
Social referencing is "constantly evaluating the state of relationship,
prior to and following any action or performance" and it goes far beyond
the
learning of social skills scripts. The scripts that are taught can be
quite
useful in some situations, but are very different from truly spontaneous
social exchanges with another person. When they learn social referencing,
they are learning to actively participate in a constantly changing social
interaction in which they are equal partners.
If a child does not understand the function of a behavior, there will be no
motivation to learn the means to successfully perform that behavior. So a
child needs to master previous stages, thereby being invested in progressing
along the experience-sharing path, before trying to learn new behaviors.
Moving too quickly means asking children to learn what they are not
developmentally ready for and have no motivation for yet.
Co-regulation is the "spontaneous action on the part of one partner to
alter
his actions in order to maintain the shared meaning of the interaction."
Learning when that coordination is in jeopardy or has been lost is one of
the most challenging aspects to co-regulation. How many times have we
watched as our children proceeded like a bull in a social-emotional china
shop, totally unaware of the havoc they were leaving in their wake?
The book and the program are wonderful for those of us who want our children
to have the opportunity to learn experience sharing. There are many
descriptions of children they have worked with, what level they started at,
what activities they used, and how they have progressed. Throughout the
book there are various "program tips" that answer many questions
before the
reader thinks of them. One example is the tips on generalization, which
is
always somewhat difficult for kids on the spectrum. Dr. Gutstein lists
the
following tips on generalization: increase the complexity of the activity;
have the child work with more and different partners; increase the need for
the child's co-regulation or coordination by reducing external structural
scaffolding such as physical boundaries, auditory and visual cues; practice
breakdown and repair of coordination as a natural, frequent occurrence;
gradually minimize and eventually eliminate adult mediation of any kind;
gradually add more competition for attention, like favorite objects that
involve solo play; move activities to many different settings; replace
adults and more competent children with carefully matched peers.
Autism Asperger's: Solving the Relationship Puzzle gives us a tool we can
use for the benefit of our children. We can advocate for its use in the
schools and we can use it at home. Those of us whose children see a
therapist can see that it is used there as well. For me, the moment that
my
son spontaneously looked me in the eye, smiled, waved and said "Bye
Mom" was
a turning point. I no longer had to ask myself how different he was
socially. The shock of the difference between that good-bye and all the
others we have shared still reverberates in my heart. He typically does
not
look me in the eye and often doesn't even look at me, doesn't smile, doesn't
wave-typically he just says "bye Mom" or "okay" when I say
good-bye. I love
my son with all my heart, and whether or not he learns experience sharing
won't change that at all. But I do think his learning of experience
sharing
would allow me to learn more of him, of who he is inside, how he thinks
about things, what he feels inside-all things a mother wants to know about
her child. This is the one area I was most concerned about when he was
diagnosed at age five. And we are blessed that only two years later we
have
access to this program.
******************************
Journey to Houston
Sherrill Strong, MSSW, CICSW
Our visit to the Connections Center in Houston surpassed my expectations.
It is even more amazing to me because those expectations were high to start
with. Before we went, if someone had told me what would happen after just
one intervention session with Dr. Rachelle Sheely, I would not have believed
it. Yet this is what happened: my son matched his step to walk side
by
side with me, and in my delighted surprise, I put my arm around him. He
then gazed up into my face and eyes and told me that he likes it when I put
my arm around him because it makes him feel warm when he's cold. For
parents of neurotypical children, this would be taken for granted. For
parents of children with a Pervasive Development Disorder, it borders on
miraculous.
That has happened on just the one occasion so far, but then we haven't been
able to keep up the interventions yet. Since we finished up our
evaluation
just as Dr. Sheely was leaving for the holidays, we don't yet have our
evaluation or recommended activities. But they will be here soon enough,
and we will be doing everything we can to see that they are carried out.
I
want the activities to be part of his life, not just at home, but also at
school, group, music, clay class and with the parents of his closest
friends.
A few days after we returned home, my husband said that D was listening
better. I had noticed that as well, but hadn't said anything because I
wanted to see if he noticed it too. I didn't want to influence his
thoughts, so I asked him when he noticed this change. And he said,
"since
we went to Houston". I think he is listening better at
least partially
because he is referencing our faces more. I suspect this will also fade
until we can get moving on doing the therapeutic activities with him.
I am cleaning out the basement as quickly as possible so we can turn it into
a distraction-free therapy room. Before we made the trip, I thought that
probably wasn't really necessary, although it is recommended in the book.
After the trip, I see how much faster things would go if we had that room.
And now that I have had a taste of how fast things could go, I am even more
motivated to get with this program.
The process of the evaluation really begins before you get to Houston.
They
have developed a very comprehensive initial parent questionnaire. My
handwriting is not great, so I asked if they could send it to me via email,
which they willingly did. Now that I have written all that down, and kept
a
copy for future reference, I hope I never have to fill out such a
comprehensive history again! It was quite time-consuming, but worth the
effort. I had also been putting together a notebook that contains all of
my
son's evaluations, progress reports, test scores and such, so I finished it
and sent a copy to the Connections Center, along with the initial parent
questionnaire and the videotape clips.
They do ask for a brief videotape containing footage that will help them get
a sense of your child before you come. I chose four segments. The
first
was from when D was almost four, when he was entranced with sprinklers.
The
video shows him going rapidly between sprinkler heads, putting his face down
close to where the water comes out, and doing a little bit of rapid finger
movement. In it he says, "Let's check out them" which is the
kind of thing
he used to say often and now just does sometimes. It also showed him
pointing with his finger while telling my husband that he should videotape
the sprinklers. The next clip was a small part of a larger meltdown.
I put
this in because I knew it was highly unlikely he would demonstrate that for
them while we were there, and it is one of the most distressing aspects for
me of my son's disorder. I wanted input from them on how to try to handle
this. Next was a brief segment of my son playing at our house with his
best
friend from school. They are acting out scenes from-who can guess-yes,
Mario from Nintendo Land. In addition to just acting out themes from the
games, they also invent their own stories. The last clip was of my son at
school, where he is fully included in the general classroom. It is a
meeting of a "book club" with the class breaking into small groups
and
reading together and discussing aspects of the book.
So once you have prepared all of that, and sent it off, you wait impatiently
for the day you actually go to the clinic in person. The first session is
parents only or a parent only, as my husband didn't join us until later.
During this session they clarify any questions they have from the materials
they received. The next session is the Relational Development Assessment.
This involves one parent engaging the child in activities that are
structured by the therapists. It is videotaped from behind a one way
mirror, so they can review it as much as they need to.
Following that, the ADOS is administered to the child. If your child
already has been diagnosed the ADOS is just used to supplement their
information about social communication. Then Dr. Sheely reviews
everything
and comes up with the activities she thinks are appropriate for your child
at that time. During the next session she tries out her hypothesis in an
intervention session. Parents are observing from behind the one way
mirror.
This session is also taped, and is for parents to take home. During this
session, she can switch gears mid-way if need be. For our son, her
hypothesis was truly amazing. She seemed to know just how far she could
help him stretch his relational skills without overwhelming him. And as I
mentioned in the first paragraph, later that day he spontaneously exhibited
"experience sharing" with me. That proved what I already knew
in my
heart-that this model would help me reach my son in a whole new way. It
was
the beginning of a road that could take him to intimacy with others. I
truly believe it will.
The last session is for parents to ask Dr. Sheely any questions they have,
about the evaluation process, the written evaluation and recommended
activities. We did not have our written materials at that meeting but
that
was an exception. We had asked them to compress two children's
evaluations
into one week, and the end of that week was the beginning of the winter
holidays. (we have since received the evaluation report and
activities and
are very pleased with it)
Prior to going to Houston, I had been wary of any other professionals
besides Dr. Gutstein and Dr. Sheely working with us. After being there,
and
seeing Ana work with my son, I have no hesitation about their other staff
people. If I could have brought Ana home with us, I would have done so.
She was so good with the children, so perceptive about what was going on,
and also just a joy to be around.
So now that we have spent money we didn't really have, and will be feeling
the effects for a long time, I ask myself was it worth it? The
answer is a
resounding yes. There are many aspects of Asperger's my son needs help
with
and this is just one of them. But in terms of developing the ability to
have relationships built on real experience sharing, there is no other
program that has the potential that this one has. That may change
tomorrow,
or next year, but for now it is the only game in town. And fortunately
for
our children, it is an incredibly good one.
(Autism Asperger's: Solving the Relationship Puzzle was written by Dr.
Steven E. Gutstein and published by Future Horizons. It can be ordered on
the website http://www.connectionscenter.com or from Future Horizons at
1-800-489-0727. It can also be ordered by any local bookstore. Dr.
Gutstein's next two books will be out this spring, published by Jessica
Kingsley Publications in England. They will also be available through the
website once they are published.)
(Autism Asperger's: Solving the Relationship Puzzle was written by Dr.
Steven E. Gutstein and published by Future Horizons. It can be ordered on
the website http://www.connectionscenter.com or from Future Horizons at
1-800-489-0727. It can also be ordered by any local bookstore)
(published in the Autism Society of America - Colorado Chapter's newsletter,
the Quarterly, vol 7, no. 4, 2001. Reprinted with permission)
******************************
Autism: a Novel Form of Mercury Poisoning
S.Bernard,
B.A., A Enayati, M.S.M.E., L.Redwood,
M.S.N., H. Roger, B.A, T BinstockSummary:
Autism is a syndrome characterized by impairments in social relatedness and
communication, repetitive behaviors, abnormal movements, and sensory
dysfunction.
Recent epidemiological studies suggest that
autism may affect 1 in 150 U. S. children. Exposure to mercury can
cause immune, sensory, neurological, motor, and behavioral
dysfunctions similar to traits defining or associated with autism, and the
similarities extend to neuroanatomy, neurotransmitters, and
biochemistry. Thimerosal, a preservative added to many vaccines, has
become a major source of mercury in children who, within their first two
years, may have received a quantity of mercury that exceeds safety
guidelines. A review of medical literature and U.S. government data
suggests that (i) many cases of idiopathic autism are induced by early
mercury exposure from thimerosal; (ii) this type of autism represents an
unrecognized mercurial syndrome; and (iii) genetic and non-genetic
factors establish a predisposition whereby thimerosal's adverse effects
occur only in some children. INTRODUCTIONAutistic Spectrum
Disorder (ASD) is a neurodevelopmental syndrome with onset prior to
age 36 months. Diagnostic criteria consist of impairments in sociality
and communication plus repetitive and stereotypic behaviors (1). Traits
strongly associated with autism include movement disorders and
sensory dysfunctions (2). Although autism may be apparent soon after
birth, most autistic children experience at least several months, even a
year or more of normal development -- followed by regression, defined
as loss of function or failure to progress (2,3,4). The neurotoxicity of
mercury (Hg) has long been recognized (5). Primary data derive from
victims of contaminated fish (Japan - Minamata Disease) or grain (Iraq,
Guatemala, Russia); from acrodynia (Pink Disease) induced by Hg in
teething powders; and from individual instances of mercury poisoning
(HgP), many occurring in occupational settings (e.g., Mad Hatter's
Disease). Animal and in vitro studies also provide insights into the
mechanisms of Hg toxicity. More recently, the Food and Drug
Administration (FDA) and the American Academy of Pediatrics (AAP)
have determined that the typical amount of Hg injected into infants and
toddlers via childhood immunizations has exceeded government safety
guidelines on an individual (6) and cumulative vaccine basis (7). The
mercury in vaccines derives from thimerosal (TMS), a preservative
which is 49.6% ethylmercury (eHg) (7). Past cases of HgP have
presented with much inter-individual variation, depending on the dose,
type of mercury, method of administration, duration of exposure, and
individual sensitivity. Thus, while commonalities exist across the
various instances of HgP, each set of variables has given rise to a
different disease manifestation (8,9,10,11). It is hypothesized that the
regressive form of autism represents another form of mercury
poisoning, based on a thorough correspondence between autistic and
HgP traits and physiological abnormalities, as well as on the known
exposure to mercury through vaccines. Furthermore, other phenomena
are consistent with a causal Hg-ASD relationship. These include (a)
symptom onset shortly after immunization; (b) ASD prevalence
increases corresponding to vaccination increases; (c) similar sex ratios
of affected individuals; (d) a high heritability rate for autism paralleling a
genetic predisposition to Hg sensitivity at low doses; and (e) parental
reports of autistic children with elevated Hg.
To see the rest of the story or to
read Testimonials from parents of autistic children who take Oral Chelation and
the results they see
http://www.extremehealthusa.com/autism.html
Your Source for Oral
Chelation
******************************
Growing Up Is Hard To Do
The other evening I was helping Jonathan with his bath, when
I noticed something I hadn't expected for several more years, pubic hair. Not
much, but definitely some. The first physical signs of maturity. This
observation brought up an interesting dilema, one which I had never had to deal
with before. How does puberty affect the Autistic child?I had read that puberty
is one of the most turbulent times in the life of any child, let alone one with
Autism. Behaviors change, and suddenly, your little boy is becoming a man.
Scary thought when that man is not going to be able to function independently
in society in many cases.At school, we had noticed an increase in aggressive
behaviors, so many, in fact, that the school was becoming concerned. Now I know
that aggression in adolescent boys is a fairly common problem. After all, they
have hormones raging in their bodies, just like their female counterparts. But
when you combine that with the already volitile nature of many Autistic
children, the problem is compounded. The Autistic six year old hitting a
classmate because she took the last cookie is one thing... the Autistic sixteen
year old doing the same thing is a whole different story. Work with your child
and the school to help curb these behaviors and everyone will be happier and
safer. Physical maturity means sexual maturity as well, and this thought is one
that terrifies parents of Autistic children. Self-stimulation suddenly becomes
much more of an issue. A six year old touching himself is only regarded as
"odd" by the general public, but a sixteen year old doing the same
thing is often interpreted as sexual misconduct by both the public and the
legal system. Making those who come in daily contact with your child, the
school authorities especially, aware that your child is going through a
difficult time physically and emotionally is an action that must be taken, no
matter how embarrassing it might be.Talking frankly with teachers,
administrators, and others can help them to understand that the behavior is not
any different than it was ten years before. It suddenly didn't become something
"nasty" or perverted. It's still self-stimulation, not public
masterbation. It is important that the school, the legal authorities and others
who come in contact with your child know that fact.Always keep in mind that
your child is a child first and foremost. All behaviors that will happen during
puberty and adolescence are not autistic in nature. They are simply a sign of
growing up. Work with your child to learn appropriate behaviors as much as they
are capable of learning. Of course, we as parents must always be aware of what
our child is doing, but then aren't we already? Just like your child learned
not to take the candy from the counter at the store and eat it, sexual and
behavioral taboos can also be learned. But, just as parents must always keep an
eye to make sure that Snickers bar doesn't wind up in a little tummy, we also
must be on the look out for behaviors that need correction and attention.If I
had all of the answers to the problems that puberty brings to the Autistic
child, I'd be writing my Nobel Prize acceptance speech right now instead of
this article, but obviously I'm not. If you have been through this experience,
my readers and I would love to have your insight into how to deal with puberty
in the child with Autism. Send any comments, suggestions or experiences you'd
like to share to me and I'll pass them on to the others who read this section
on About.
http://autism.about.com/library/weekly/aa011302a.htm
******************************
How To Enjoy Disney World
Part One: ...and live to tell the tale!!!
More of this Feature
Part 2: Places to
Eat That Serve Macaroni and Cheese
Part 3: Flight Tips
for Travel with an ASD Child
From Other Guides
100 Years of
Magic
Ten
Mistakes Theme Park Visitors Make
Top 5
Walt Disney World Guidebooks
Every year, my family and I travel to Disney World. This is
a wonderful yet not exactly relaxing vacation at the best of times and having a
child with an Autistic Spectrum Disorder (ASD) in the party tends to make it
more challenging!At home, we can all know and live with the behaviors. I barely
notice the stimming anymore unless it is new, very loud or of a particularly
entertaining type. Put your child with ASD on a plane for 3 hours and every
noise, every stim becomes exaggerated. You cant escape the stares from other
passengers and you may feel the need to over-compensate in some way.Seating on
planes is a pain. There are four of us: Two adults and two children (both under
seven). We can only buy seats in a three and one configuration, and since I am
"better" with J., my husband gets to sit alone. He reads a novel or
watches the movie, while I am wiping faces, doing joint compressions, and
checking under the seats for lost toys! J. enjoys the airplane food while I am
peeling the pasta off my face and picking peas out of my hair! Would I stop
going? NEVER!!!!What to Do and See at Disney World & the Orlando Area
If you have one, be sure to bring your handicap-parking pass. This way you can
enter or leave the park quickly if it becomes necessary
http://autism.about.com/library/weekly/aa010102a.htm
******************************
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