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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Saturday December 15, 2001
INDEX:
* Vaccine Injury Alliance
* Diagnostic Survey Participation
Urged Survey for Parent Evaluation of
Child's Progress
* Twenty Ways to Use Visuals with Children
* AUTISM GRIEF CYCLE
* Sensory Defensiveness and the Processing of Touch How Do Humans
Receive and Interpret Touch?
******************************
Diagnostic Survey Participation Urged
Survey for Parent Evaluation of Child's Progress
since we published the Miller
Diagnostic Survey request
asking parents with autistic children to participate. Dr. Mill reports that
"the response has been very good. and we currently have many parents who
have completed the MDS and received Summary Developmental Profiles of their
children. Those parents will have an opportunity to assess their children's
progress when they complete a second MDS in June."
However, in order to address the larger question of the effect of different
approaches (programs) on comparable groups of children, they need a much larger
group of between 800 and 1000 participants.
In another note to the FEAT Newsletter, Miller writes:
We will continue to process and provide profiles for parents who
complete the MDS through October, 2001. After that, however, the amount of time
for treatment/education to have its effect between November 1 and June, 2002 is
only about 7- 8 months. We stop collecting MDSs at that point because comparing
the effects of one program over a 7- 8 month with a program in effect over a
9-10-month, disadvantages the one covering the shorter period.
In other words, the sooner we have the required number of MDSs the more
meaningful the comparisons between the different approaches with comparable
children.
Parents can access the MDS by going directly to
www.millermethod.org/mds.html.
So if you like having scientific data about program treatments,
consider doing this survey. Autism research starts with us, the parents.
Here again is the project description.
In order for a child with autism spectrum disorder to progress it is
important to have a clear sense of his or her capabilities and lags in areas
ranging from body organization, social contact to communication and symbolic
functioning. We refer to the child's pattern of capabilities and lags as his or
her developmental profile. Each child on the autism spectrum is different and
therefore each child's developmental profile is different.
The Miller Diagnostic Survey (MDS) - formulated at the Language and
Cognitive Development Center of Boston - turns parents responses to
questions into a developmental profile for their child. This developmental
profile provides a framework for helping parents of special children answer
two questions:
"How well is my special child progressing in his/her school program?"
"How well do comparable children progress in school programs with
other approaches?"
Getting a Developmental Profile of Your Special Child.
To answer the first question you need only answer a series of
questions about your child. These questions are now available under
Parents/Caregivers on http://www.millermethod.org/mds.html. To transmit
your responses to the Language and Cognitive Development Center (LCDC) of
Boston click the send button at the end of the questions. At LCDC your
responses are organized into various categories and then transmitted to you
as a Summary Developmental Profile for your child. The categories which
make up the profile include Sensory Reactivity, Body Organization (both
gross and fine-motor), Problem Solving and Tool Use, Social Contact,
Communication (receptive, expressive and non verbal), Symbolic as well as
Atypical Functioning.
You will find that there are five possible choices for each question.
For example, Question 57 under the Receptive Communication category reads
"When asked by word and gesture to get a familiar object from another room,
does the child do so?" Each possible choice is scored as follows: Never=1;
Rarely=2; Sometimes=3; Often=4; Always=5.
Then, to get the average (or mean) score for a category, a computer
program automatically adds up the scores reflecting your choices in each
category and divides them by the number of questions in that category. If a
parent has chosen Rarely (2) or Sometimes (3) for their responses in a
particular category, the Mean for that category will fall between 2 and 3.
In this way, means are developed for each category resulting in a Summary
Developmental Profile of your child's status based directly on your
observations and knowledge of your child.
Comparing Developmental Profiles at the End of the School Year.
At the end of the school year you again answer the same questions as
before. If your child has improved in certain categories, that improvement
will be reflected in your changed scores. For example, suppose in response
to Question 57 you had previously scored Rarely (2) with regard to your
child's ability to get a familiar object from another room, but by the end
of the year you found that your child can now Often (4) respond to this
request. If that kind of shift holds true for most of the other questions
in that category this would indicate that your child's receptive
understanding has improved. A statistical analysis comparing the two
developmental profiles will determine which changes in scored categories are
statistically significant. The results of this analysis will be sent to you
so that you can independently check the findings.
A Caution:
Over or underestimating your child's functioning at the beginning and
end of the year will impair the value of the MDS findings. One way of
reducing this kind of error is to perform little experiments when you are
not quite certain of your answer. For example, Question 23 under the
Problem Solving and Tool Use category asks, "If you placed three chairs on
the ground in different positions (one on its side, another on its back, and
a third with its back up) and you asked the child to right (or fix) the
chairs, can the child do it?
Here, instead of guessing, you might on 2 or 3 occasions simply
place 3 chairs on the ground in the positions indicated and ask your child
to fix them. What your child does or doesn't do on these occasions will
provide you with a firm basis for answering the question. Similarly, if you
are uncertain about your child's ability (Question 86) to give you 3, 5 or 7
of a particular set of objects, place a group of objects (small blocks or
marbles) in front of the child, hold out your hand and ask for 3, 5 or 7 of
those objects.
As the child places the objects in your hand it is important that you
look away and keep your hand outstretched for a few seconds after the child has
reached the requested quantity. If the child stops at the requested quantity
without you cueing the child by either nodding your head or closing your hand
prematurely, that provides good indication that the child has related a number
to a particular quantity of marbles or blocks.
The Immediate Value of This Information.
This information can provide you with a clear sense of how your child
is functioning. You may decide at the beginning of the year to share your
child's developmental profile with your child's teacher or therapist so they
might build on your child's strengths or focus on your child's developmental
lags. Further, at the end of the year, you will have data comparing the first
developmental profile with the second that can tell you whether or not your
child is making progress in his or her program and whether or not certain
adjustments in that program are necessary.
The Bigger Picture.
Beyond the immediate value that the MDS can provide parents, there is
another potential that has implications for the entire autism community.
Currently, while there are many claims made by various programs/approaches
about their effectiveness, there is no hard data comparing outcomes with one
program/approach with another with comparable children. However, once you
complete the MDS and have a developmental profile -- and indicate the approach
being used with your child (ABA, Greenspan, Miller Method, Option, TEACCH or
other) - you provide a basis for comparing one program with another with regard
to gains achieved.
To insure that biases do not influence the comparison of results
from one program with another, we will seek to have an independent panel
match children from different programs on the basis of their age, sex and, particularly,
on their MDS developmental profiles. Care will be taken to insure that there
are no significant differences between one matched group and another.
All the profiles will disguise the child's names and codes will be
devised to reflect the different programs in which the child is enrolled.
Then, at the end of the year, results achieved by children in matched groups
from different programs will be statistically compared.
Clearly, the greater the number of participating parents with
children in different programs/approaches, the more likely that there will
be matched groups that can yield important information about the gains
achieved by different programs.
If after reading this description and reviewing the MDS, you have
questions, comments or suggestions do not hesitate to e-mail me
ArnMill@aol.com. Survey: www.millermethod.org/mds.html
Arnold Miller, Ph.D.
Executive Director
Language and Cognitive Development Center, Boston
www.millermethod.org
******************************
Vaccine Injury Alliance
Forward this to everyone concerned about vaccine reactions. Post this on
web sites, and shout it from the mountaintops!
This is one of the more exciting announcements I've had the privilege of
making. Some of the best legal minds in the country have created a
strategic "Vaccine Injury Alliance". If you have a website,
please point it
towards www.vaccineinjury.org so
people can get the legal help they need if their child has a vaccine reaction.
The most exciting part of this to me is and I'll quote, "pursuing
individual
civil actions across the nation if the Program denies a claim or awards an
inadequate amount of compensation for the adverse reactions suffered."
Sincerely,
Dawn Richardson
----------------------------------------
Dawn:
Here if the Press Release. Always nice to talk with you!
Peacefully,
Jeff Sell
Hitt, Patterson & Sell
www.HittPattersonSell.com
713.654.7776
JZSell@HittandPatterson.com
(office)
832.797.8191 (cell/v-mail)
jzsell@pdq.net (home)
PRESS RELEASE
Contacts: Jeff Thompson - 888.709.6674
Jeff Sell - 832.797.8191
For immediate release
2001, Houston, Texas
http://www.vaccineinfo.net/legal_help_for_vaccine_injury.htm
www.vaccineinjury.org
******************************
Twenty Ways to Use Visuals with Children
by Elisa Gagnon & Deborah Griswold
University of Kansas Medical Center
1. Label classroom
furniture and materials with an object/picture/icon paired with the written
name of the item.
2. Opening group: Use a group schedule with pictures, words, and clock
icons to sequence the day.
3. Individual schedules: Popular choices include a small 3-ring notebook or
photo album with pictures of each activity. Other schedules can be developed by
using objects to represent each activity of the day, by placing pictures on a
ring to attach to a belt loop, by using a wipe-off board, cards and a pocket
chart, or a computer- generated schedule that is updated each day.
4. Behavior expectations: Laminate a visual that represents the desired
behavior and Velcro™ the visual to the child's desk. For example, icons
representing "Sit", "Quiet" or "Raise your hand"
can be placed on the student's desk to reinforce these appropriate behaviors.
5. Grooming: Create a pocket sized grooming check card for a child. The
card could include icons or words representing tasks such as "Hair
brushed", "Face washed", "Shirt tucked in", and
"Zipper zipped"
6. Grocery shopping: Collect pictures of items to be purchased. For lower
functioning students use a piece of the item packaging for easy recognition and
for higher functioning students use icons or a written list.
7. Hand washing sequence (brushing teeth, bathing, showering etc.): Display
and place by the sink or bathtub.
8. Restaurant outings: Use a picture menu for ordering. At a fast food
restaurant a nonverbal student can order independently by pointing to pictures
or handing pictures of the desired items to the person taking the order.
9. Song time: Create a sequence of pictures for key words in the song. Be
sure to allow enough wait time for the person with limited verbal abilities to
respond.
10. Scheduling reminders: Place a written reminder on the student's desk to
remind them of an upcoming event. For example, "Remember: Speech today
with Mrs. Johnson at 11:00. After speech you will join the rest of the class in
the lunchroom."
11. Book mark reminders: Give a child a bookmark with a visual message.
"Remember: You will earn extra points if you stay in your chair at your
desk during silent reading!"
12. Classroom rules: Post rules where all students can see them. Include
icons or pictures for students who are non-readers to remind them of the rules
as well.
13. Choice diversity: Use a choice board with icons or photographs of
choices available during free time.
14. Reinforcement menu: Display a menu of preferred and acceptable
activities where the student can see it as they work. It will remind them of
the rewards that they are working towards.
15. Computer: Place instructions on frequently used procedures next to the
computer. Use pictures or words according to your student's abilities.
16. Lunch choices: Place a menu board with pictures or objects to represent
lunch choices. This could be used during Opening Group to enable student to
choose lunch foods or to prepare students for what foods will be served.
17. Mini-schedule: A mini-schedule should complement the daily schedule by
providing information concerning the exact tasks that will be occurring during
a targeted period of time. For example, while the daily schedule contains more
general information concerning the days' events such as reading, math, lunch,
etc., the mini-schedule for math could depict activities such as counting,
writing numbers, and matching. A mini-schedule can be used to teach independent
work habits.
18. Facilitate discussions at home about school: Send home a Zip-lock™ bag
with an item enclosed that will cue students and parents about a particular
activity that occurred that day. For example, if the class went on a nature
walk include a pine cone or if the class popped corn include a kernel. This
will help stimulate conversations that can include all family members.
19. Arts & crafts projects: Display steps needed to complete the
project as well as the finished product. This technique will encourage
independent task completion and can be generalized to cooking or other
sequential activities.
20. Holidays: Enhance your students' involvement in holidays or other
special occasions. Place an icon symbolizing the occasion on the class
calendar. Count off the days until the event. Use art and music accompanied by
visual cues to generate enthusiasm and inclusion.
******************************
AUTISM GRIEF CYCLE
The "Cycle Of Grief" Is Much like a Unicycle-You Feel Alone and
Off-Balance!
During my many journeys through denial to acceptance and back again, I have
become intimately familiar with the "cycle of grief."
Please note that the diagram is a sample of a typical cycle. No two people's
cycles will ever be alike, and any given individual's cycle may change from
crisis to crisis. During the period following Richards diagnosis, I jumped out
of denial straight into a combination of shock and anger, followed closely by
isolation, depression, and guilt. I have experienced all of the feelings listed
on the diagram, many times, and in many combinations.
Learning that your child has special needs creates a tremendous sense of loss,
and parents have various ways of coping with this kind of grief. You and your
spouse will likely wrack your brains trying to figure out what caused the
autism. Each of you may blame yourselves, or worse, each other.
My first instinct was to blame myself-was it that glass of wine I drank during
the first trimester, or those "social drugs" I experimented with in
my early twenties? As I got more sophisticated in my self-blame, I thought it
must have been something karmic, perhaps a punishment for some error or
wrongdoing just prior to my pregnancy. As I read more about autism and its
actual causes, I started to question the following possibilities:
· The poorly-ventilated office where I worked during the early part of my
pregnancy had been sprayed by an exterminator. Exposure to insecticides has
been proven to cause autism.
· My mother had worked at an optical products factory during much of my
childhood. I learned that there were hundreds of families with autistic
children in Massachusetts who either lived near, or whose family members had
worked at, another major optical factory. I assumed that similar, potentially
damaging chemicals were used at both plants.
· The vaccinations Richard had had as an infant and toddler, particularly the
pertussis part of the DPT, and the measles vaccine as well. (Although
impossible to prove on a case-by-case basis, childhood vaccines are suspected
as a possible cause of autism.)
Richard's father blamed the fertility drug I had taken. He held fast to that
assumption for years, although there was little or no research to prove his
theory. We were both angry and needed to blame something or someone. As we
tried to cope, we both found it easiest to blame me and/or the decision I had
made. It never occurred to me until years later that a component of Richard's
father's genetic makeup could have somehow contributed to the autism. What it
all boils down to, however, is that there is absolutely no way of ever knowing
for sure what caused the autism-although I still can't help but wonder.
Our Own Circle of Sadness
Riddled with sadness and self-imposed guilt, I sat and cried for about a month
as Richard's father searched for statistics (the incidence of autism, what
level of functioning Richard had achieved, what we could expect, etc.) Later,
as I came out of my funk, I starting reading every book on autism that I could
find, and later founded an autism support group. Richard's father dove into his
work and pretty much stayed there, as if somehow things would be okay if only
he could earn enough money. We both developed a strong sense of purpose and
duty but, more often than not, could not be there for each other emotionally.
In counseling during the breakup of my marriage to Richard's father, my
therapist (who specializes in working with autistic children) said, "The
moment a child is diagnosed, it should be mandatory that the parents seek
counseling immediately and stay in counseling for years. Coping with something
like autism is just too difficult for most couples to handle on their
own!" While I can honestly say that Richard's autism was not the major
cause of my divorce, it did facilitate a further breakdown in communication as
we each tried to cope with the situation as best we could.
http://autismawakeninginia.bizland.com/autismgriefcycle/
******************************
Sensory Defensiveness and the Processing of
Touch
How Do Humans Receive and Interpret Touch?
Touch is really our first language.
It begins to function in utero and provides us with the ability to begin to
understand and react to the world. Our skin is the sensory organ that holds
many specific types of touch receptors. We perceive pain and temperature
through nerve endings in the different skin layers, within joint capsules,
ligaments and tendons. Hair movement, pressure and vibration detection allow us
to receive information from our environment. This sensation is then sent as a
nerve impulse, to the brain for processing and interpretation.
Sensory Defensiveness
The term sensory defensiveness was first described by Knickerbocker (1980).
She believed that a disorganized response to sensory input (such as being
touched) could lead to an inability to inhibit the flood of sensory input to
the brain. In other words, if a non-painful, ordinary touch is not organized or
interpreted normally by the nervous system, the response of that system may be
a "defensive" one.
Imagine that you are alone, it is night-time and you are walking down a dark
and unfamiliar alley. You begin to sense the presence of someone behind you,
your heart may begin to beat faster, you may sweat, and you may feel a
heightened sense of danger. These reactions are brought about by your
sympathetic nervous system, your brain interprets a situation, like the one
above, as dangerous, and a "fight or flight" response takes over.
If a non-painful, ordinary touch is interpreted by the brain as dangerous or
unpleasant, the sympathetic division of our nervous system may become activated
and we may over-respond to a seemingly benign touch. In children with sensory
defensiveness we sometimes see the expression of this defensiveness as
hyperactivity, an aversion to having the teeth or hair brushed or a negative
response to being touched.
The Sensory Integration and Praxis Tests (SIPT)
Occupational Therapists use the Sensory Integration and Praxis Tests (SIPT)
(Ayres, 1989) to assess children 4 through 8 years of age. There are 17 tests
in the SIPT and none of the tests require verbal responses from the child,
although one test depends upon auditory-language comprehension. The SIPT is
used to evaluate children with mild to moderate irregularities in learning and
behavior. The SIPT, when combined with other types of information gathering and
evaluation, aids in the treatment of sensory integration disorders.
******************************
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