September 9, 2016 at 8:21 am #67
FEAT BC AdminKeymaster
This area is for discussions in general topics.
June 5, 2000 at 8:37 pm #5774
Attn: Parents and Seniors Therapists
Re: "Socialization and Generalization" Workshop
conducted by Lisa Wincz, ABCs, New Jersey
@ Simon Fraser University, June 9/00, 9am – 4pm
Maggie Benston Student Services Centre, Rm 2292 & 2294
Just a reminder to all senior therapists and parents who take on the role of senior therapist for their child's team, pls be reminded of the above workshop to take place this Friday, June 9th. Pls call Irene Cheung @ 439-3073 to reserve a seat. We only have 11 seats left!
For those who have already reserved 1 or more seats, pls contact me if your numbers have changed so that we can make them available to others.
Thank you all for your interest!
Irene.June 1, 2000 at 11:47 pm #5773
Victor and Anna SilveiraMember
Our son Christian was in the "secretin study" at sunnyhill. Since he received the placebo we are being offered a vial of the drug at a cost. we need to find a physician willing to administer it.
Has anyone had a physician administer the drug for them since the conclusion of the trail?May 25, 2000 at 4:18 pm #5772
I would like to ask your help in getting the word out about this weekend's rally in support of the CHILD SERVICES EQUALITY ACT which calls for the end of waitlists for the health and social programs and services that so many BC children desperately need.
THE RALLY IS THIS COMING SATURDAY (27th)AT THE ART GALLERY AT THE CORNER OF HORNBY AT GEORGIA AT 2 PM
Wear red shirts/clothing to show your support and come along. Families, friends, and professionals are all welcome.
For further information or if you would like to become involved and download a petition to circulate, visit the website at:
Hope to see lots of FEAT families there.May 24, 2000 at 5:06 pm #5771
Michelle Weis has quite a few new therapist names on her list. Contact her at 882-9196. The Therapist are spread out through most of the centers in greater Vancouver. Give her a call if you need more, or are looking for therapist
DaveMay 10, 2000 at 10:36 pm #5770
Michelle Weis just let me know that she has some
new names on the Therapist list. If you would
like a copy, contact her @ 882-91May 9, 2000 at 3:46 am #5769
Passing on a piece from the FEAT Sacramento list…
Diagnostic Breakthrough in Autism and Mental Retardation Reported
[The introductory message, related questions and answers and study
abstract is provided by David Pisani and Ellen Powell EPowell@modimes.org of
the March of Dimes. This study was funded in part by the M.I.N.D.
Institute. Thanks again to R. Rollens.]
Today some exciting research findings on autism and mental retardation
are being released by the California Birth Defects Monitoring Program
(CBDMP) and the National Institutes of Health. Because of your interest in
this issue, we want to share them with you right away.
A successful pilot study conducted by Department of Health Services/
California Birth Defects Monitoring Program (CBDMP) and the National
Institutes of Health (NIH), with collaborators at the Department of
Developmental Services and The M.I.N.D. Institute, provides an important
clue for researchers looking for causes of and cures for these conditions.
The abstract of this study is provided below. In brief, the study
looked for biomarkers at birth in children with autism, mental retardation
or cerebral palsy by analyzing newborn blood samples. The results are
compelling: strikingly higher levels of four substances crucial in nervous
system development in 95% of children with autism and mental retardation.
Children with cerebral palsy had different biomarkers indicating prenatal
exposure to common and treatable medical conditions may underlie many cases.
If the findings hold, there are dramatic implications. If we can
identify babies at risk for these conditions at birth, we may be able to
jump start intervention. Equally important, the possibility of biomarkers
at birth gives scientists a new and highly promising research direction in
the search for causes.
The next step in this research is to obtain funding so that CBDMP can
confirm and expand upon these findings with a larger group. As this pilot
project demonstrates, the Program is uniquely qualified to lead this effort.
CBDMP has proven competency in data collection and state-of-the-art
research. DHS archives newborn blood specimens and has an established
relationship with the only laboratory in the country currently capable of
performing this procedure. DDS Regional Centers are single points of entry
into services– 85-90% of affected children can be found and diagnostic
information obtained. The CBDMP's demonstrated research capability, ability
to find cases, and access to newborn blood specimens is unique in the
The March of Dimes supports additional State funding for the
California Birth Defects Monitoring Program to investigate causes of autism,
cerebral palsy and mental retardation. Investing in this research-
* may uncover the causes of these serious disabilities and
contribute to improved interventions;
* will contribute to answering critical public health questions; and
* positions the State to receive millions in Federal research money.
David Pisani and Ellen Powell EPowell@modimes.org
March of Dimes
* * *
Neuropeptides and neurotrophins in neonatal blood of children with
autism, mental retardation, or cerebral palsy
Key Findings and Implications
In the first study to find biomarkers for children with autism and
mental retardation at birth, we found:
Strikingly higher levels of four substances crucial in nervous system
development in children with autism;
The same high levels in children with mental retardation, suggesting a
similar biologic process;
Elevated levels of the four substances in 95% of children with autism
and/or mental retardation;
Children with cerebral palsy had biomarkers similar to healthy
This successful pilot study provides new hope for parents and an
important clue for researchers looking for causes of and cures for these
disabilities. The implications are phenomenal:
If we can identify babies at risk for these conditions at birth, we
may be able to jump start intervention.
It is important to confirm these results. However, this is a very
promising new lead that may help solve the puzzle more quickly.
Autism and mental retardation are among the most serious and common
lifelong disabilities, and some reports suggest autism is on the rise.
Questions and Answers
What did the study find?
A: The study found that children with autism or mental retardation,
when compared to children without these conditions, had higher levels in the
blood at the time of birth of four specific proteins that are crucial to
nervous system development.
How was the study conducted?
A: We conducted laboratory tests on blood samples from newborn
children who were later diagnosed with autism, mental retardation or
cerebral palsy and children who were free of these conditions. In each
group there were approximately 60 children. All of the children were born
between 1983 1985 to mothers living in one of four San Francisco Bay area
counties. Those years and counties were chosen for study because of
existing data from that period and for that location on children with
cerebral palsy and control children. Building on existing data enabled
researchers to conduct this research more quickly.
Where did the data come from?
A: The diagnostic data on children with autism or mental retardation
was provided by the California Department of Developmental Services (DDS)
and the Regional Centers. Blood samples were obtained through the Newborn
Screening Program of the DHS Genetic Disease Branch. The study was approved
by the California Committee for Protection of Human Subjects, which has
responsibility for assuring the confidentiality of all data.
Arent these data confidential?
A: Yes. Confidentiality of these data was maintained throughout the
study. We have extensive procedures in place to protect the privacy of
every child in our studies.
Why was autism the focus of the study?
A: Recent reports suggest that not only is autism common among
children, but the condition may be increasing. Typically, autism, mental
retardation and cerebral palsy cannot be reliably diagnosed until a few
years after birth. If these conditions can be identified earlier,
intervention that may help children with these conditions can begin sooner.
What is autism?
A: Autism is a severe disorder of communication and social
interaction resulting in lifelong disability.
Who conducted the study?
A: The study was conducted by the California Birth Defects Monitoring
Program (CBDMP) of the California Department of Health Services, and the
National Institutes of Health (NIH), in collaboration with the California
Department of Developmental Services. Funding was provided by CBDMP and
NIH, with partial support from The M.I.N.D. (Medical Investigation of
Neurodevelopmental Disorders) Institute at the University of California,
Do the study findings mean we now have a way to positively identify
children with autism or mental retardation at birth?
A: No. However, based on this exciting new finding, we can target our
research with the hope of developing a screening tool in the future. First,
our findings must be confirmed.
Why were these proteins selected for measurement?
A: We selected proteins that are known to have a role in regulating
growth and development of the brain during gestation and proteins that are
known to contribute to long term memory, learning and responses to sensory
stimuli. These aspects of behavior are particularly important in autism.
We found two neuropeptides and two neurotrophins, whose levels were
dramatically higher in children with autism or mental retardation than in
the control children or children with cerebral palsy.
Given that the diagnosis of autism is sometimes difficult, how can you
be sure that the children in your study were correctly diagnosed? Are there
similar concerns for cerebral palsy and mental retardation?
A: We are very confident. We know that the diagnosis of each of
these conditions is quite complicated so we went to great lengths to confirm
the diagnoses on all children in the study.
Do these findings confirm that autism and mental retardation are
conditions that develop during gestation and are not due to environmental
factors after birth?
A: Our findings showed abnormal levels of certain proteins present at
birth in children with autism or mental retardation. These findings suggest
a potential biological indicator at birth, but they do not address the more
complex question of WHEN these conditions occur. We know that the brain
develops from gestation through early childhood.
Is there any evidence that might suggest a link between autism and
A: Although there has been much speculation about such a link, this
study could not address that question.
Do these findings suggest that genes may play a role in causing autism
or mental retardation?
A: There is considerable evidence already to indicate that there is a
genetic component to autism and mental retardation. This research provides
some clues for identifying which genes may be important in the development
of these conditions.
Could these findings lead to prevention strategies that might be
implemented after birth?
A: First, these findings must be replicated in further studies. If
our findings are correct, well be able to identify children at risk for
these conditions much earlier than currently, and practitioners can try
various interventions to see what works.
Parents of children with autism have suspected that diet may play a
role in their childs condition. Does this study provide any information on
A: No. Issues involving diet were not part of the study.
Do the results suggest a similarity between autism and mental
retardation that we have not recognized before?
A: Yes. For the proteins we studied, children with autism and
children with mental retardation without autism had the same result. As
other proteins are studied, differences may become apparent.
Will these findings lead to a screening mechanism for all babies at
A: It is much too early to know. First, we must be sure that these
findings are true. Then scientists must develop the technology to screen
large numbers of babiesif screening is appropriate. Finally, policymakers
must determine whether widespread screening or some other mechanism would be
Could the results also suggest that these proteins could be measured
even before birth by drawing a sample of the unborn babys blood?
A: Again, its much too early to know. Our results are based on one
point in timethe newborn period. We do not know how levels of these
proteins are different at different points in time. Future research must
address this question.
How confident are you of your results?
A: As is true for all research, the scientific process depends on
getting the same results several times. With this new and startling
finding, we are anxious to continue this work. We have enough confidence in
this study to launch a bigger study, once funds become available.
How do you explain why levels of these proteins in the blood of
children with cerebral palsy were different from the levels found in
children with autism or mental retardation?
A: This result is consistent with current knowledge that cerebral
palsy represents a different kind of problem in the brain than autism or
mental retardation. We suspect that cerebral palsy has different origins
than autism or mental retardation. This study supports that hypothesis.
Does this study suggest that if we could lower these high levels of
proteins in children with autism or mental retardation that their condition
A: No. The study does not answer that question. We dont know
whether the high levels of these proteins could cause autism and mental
retardation, or whether the high levels are a sign of something else going
What is the next step?
A: First, in accordance with standard scientific protocol, we want to
confirm these results by looking at blood samples from more children. Then
we want to develop a database of children with these conditions so that we
can look at other ways in which they are alike and different in order to
find additional clues about causes. We also want to expand our
communications efforts so that we can keep the public informed about this
research as we go forward. Additional funding will be necessary to
accomplish these goals.
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This abstract was presented at the annual meeting of the American Academy of
Neurology, San Diego, May 3, 2000. The manuscript detailing these findings
will be published in late summer.
NEUROPEPTIDES AND NEUROTROPHINS IN NEONATAL BLOOD OF CHILDREN WITH AUTISM,
MENTAL RETARDATION, OR CEREBRAL PALSY
Karin B. Nelson, M.D., J.K. Grether, Ph.D., James M. Dambrosia, Ph.D., Lisa
A. Croen, Ph.D., Ben F. Dickens, Ph.D., Robin L. Hansen, M.D., Terry M.
Category: Autism, Mental Retardation, and Cerebral Palsy
Objective: To investigate whether concentrations of certain neuropeptides
and neurotrophins in neonatal blood of children with autism, mental
retardation (MR), or cerebral palsy (CP) differed from those in control
Background: The etiology of these developmental disabilities is
incompletely understood and there is no known biomarker for these disorders.
Methods: Case status was identified from records of California state
service agencies. Immunoassays were performed masked to outcome by
recycling immunoaffinity chromatography on archived neonatal blood drawn for
routine metabolic screening, measuring vasoactive intestinal peptide (VIP),
calcitonin-related gene peptide (CGRP), brain derived neurotrophic factor
(BDNF), neurotrophin 4 (NT4), substance P (SP), and antibodies to myelin
basic protein (MBP), glial fibrillary acidic protein (GFAP) and neuron-axon
filament protein (NAFP). Concentrations of analytes that best distinguished
autism and MR from controls were chosen by recursive partitioning (CART).
Results: Concentrations of SP and antibodies to MBP were not different in
the 4 outcome groups. Antibodies to GFAP and NAFP were significantly lower
in children with autism and children with MR compared to control children,
but there was considerable overlap in the distributions. Mean
concentrations of VIP, CGR, BDNF, or NT4 were not different in children with
autism who did or did not also have MR, nor among children with CP who were
or were not also mentally retarded.
Children with concentrations of 2 or more analytes exceeding these values:
VIP >31.5 pg/ml, CGRP >32.8, BDNF >24.9, or NT4 >48.8
N (n) %
Autism 64 (62) 96.9 %
MR only 66 (61) 92.4 %
CP 65 (6) 9.2 %
Controls 54 (0) 0 %
Conclusions: Most children with autism or MR had concentrations of 2 or
more of the measured neuropeptides or neurotrophins in peripheral blood in
the earliest days of life that exceeded the levels indicated, while few
children with CP and no control child did. These substances did not
distinguish children with autism from those with MR.
________FEAT "Night of Caring" Dinner Dance June 10_______
Editor: Lenny Schafer | Eastern Editor: | News Wire: Ron Sleith
email@example.com | Catherine Johnson PhD | >
Autism News Talk list – mailto:FEATBackfirstname.lastname@example.orgMay 9, 2000 at 3:44 am #5768
Just a reminder the next Autism Behavioural Therapist Training Workshop is this week-end, Saturday, May 13th. There are spaces available for anyone interested in learning the techniques of Discrete Trial Training and other behvioural principles used in Lovaas treatment programs. Please call Sharon at 786-3536 for registration information. The location is Simon Fraser University in Burnaby, from 9am – 5 pm. The cost $20 per person.
See you there, Sharon BaxterApril 21, 2000 at 1:20 am #5767
I was listening to radio in the car this
afternoon, and I heard that Bill Good is doing a
show on Autism tomorrow Friday April, 21. We
should tune in and check it out.
Bill Good is on between 11:00am and
1:00pm on CKNW 980 AM
DaveApril 20, 2000 at 12:24 am #5766
Passing along a story from the FEAT Sacramento newsletter.
Brick Study Calls For Epidemiology Research: NAAR
The National Alliance for Autism Research (NAAR) calls upon the
National Institutes of Health and the Centers for Disease Control and
Prevention to launch a nationwide survey of the rates of autism in light of
a startling new study that shows an unusually high prevalence of children
affected by the disorder in Brick Township, New Jersey.
The long-awaited study of children between ages 3 and 10 living in
Brick Township, released Tuesday by the CDC, found 6.7 per 1,000 or one in
every 150 children were affected by a range of autism disorders, including
those who are mildly affected by the condition to those who are severely
impaired. The prevalence of children suffering from a more narrow definition
of autism for the year of the study 1998 was 4 per 1,000.
The CDCs findings are astonishing, said Dr. Eric London, NAARs
Vice President of Medical Affairs. For decades, the generally accepted
figure and the one cited most often in the medical literature was that less
than one child per 1,000 was affected by autism.
In recent years, a number of studies outside the United States have
estimated the prevalence of autism as one out of every 1,000 children for
the narrow range and two out every 1,000 for the entire range of autism
The results of this study need to be put into a broader context, Dr.
London said. This does not necessarily mean there is a cluster of autism
in Brick Township. The fact is that we simply do not have enough data to
determine the prevalence of autism in this country. We do not know if this
is an unusually high number or if it is representative of autism prevalence
in the United States. Only through additional research will we be able to
evaluate the strikingly high numbers found in Brick to determine if they
reflect the overall population or if there are disparities in the rates in
different geographic areas, Dr. London said.
That is why we are calling on the NIH and the CDC to invest in an
autism prevalence study.
The high rate of autism in Brick Township underscores the widespread
concern within the autism community that the number of children with autism
is not only significantly higher than previously believed but possibly on
This study used the strictest possible diagnostic criteria, Dr.
London said. The high numbers found in Brick Township are undeniable.
The Brick Township study was initiated by the Brick POSSE, a group
of parents spearheaded by Bobbi Gallagher who were alarmed at what appeared
to be an especially large number of young children in their area diagnosed
with autism that they feared could be linked to possible toxic environmental
The POSSE collected data on the number of children affected by autism
and in 1997, with the help of NAAR, contacted the New Jersey State
Department of Health and Human Services.
At the behest of Sen. Robert Toricelli and Rep. Chris Smith, the CDC
and the federal Agency for Toxic Substances and Disease Registry (ATSDR)
developed a four-part plan that included the prevalence investigation, a
review of the literature on environmental factors and autism, an
investigation of environmental pathways for human exposure, and community
education and involvement activities.
In addition to the release of the prevalence investigation, the ATSDR
s report found three classes of chemicals that contaminated the townships
water supply at various points in time. Dr. London stated, It would be
difficult to link these or other chemicals to the causes of autism given our
limited understanding of the neurobiology of autism.
Given the critical importance of this issue, NAAR will be funding a
prevalence study in nearby Staten Island, an area where families are also
concerned about the proximity to toxic waste sites.
NAAR was founded in 1994 to fund biomedical research into the causes,
prevention, treatment and cure of autism and related disorders. Since 1997,
NAAR has committed over $3 million in grants to 50 scientists in the United
States, Canada, Italy, Spain and Russia. NAAR has identified autism rates as
a critical area of research.
Eric London, M.D.
Vice President-Medical Affairs
National Alliance for Autism Research
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http://www.feat.org/FEATNewsApril 18, 2000 at 5:01 am #5765
If any one is going to the F.E.A.T. meeting in
West Vancouver on Wednesday night, Cyntia
Stark needs a ride from Vancouver. If you can
give her a ride, Please call her at 827-0014
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