Autism among us: Rising Concerns and the Public Health Response
Script: Version 4 6/20/03 SHORT
***FINAL***
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TAPE: Cut – 1 Pre-Con & Open RT: |
outq… Music sting Walter Trout – Cut #6 – 'Through The Eyes of Love' |
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CU BILL ROPER CG: William Roper MD, MPH WS Panel |
Roper: Hello, I'm Bill Roper. Welcome to
another session of Public Health Grand Rounds, a collaboration of the Centers
for Disease Control and Prevention, and the a condition which is on the rise among our children. Is it because of BETTER DIAGNOSIS or is there some OTHER UNDERLYING CAUSE? My colleagues here and I will examine these and other key questions. |
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SS:(800) 728-8232 SS:International Technical Help: (404) 639-1289 |
But first here are some important CONTACT numbers if you're having trouble receiving the program. For TECHNICAL assistance call: 800 Or for INTERNATIONAL viewers, please call: 4-0-4 [PAUSE] |
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CU BILL ROPER CG: William Roper MD, MPH |
Roper: With reported autism rates
RISING among children, many communities are mobilizing to ensure early
diagnosis and provide adequate services.
Here's a snapshot of views on the task we're facing from |
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TAPE: Cut – 2 Tease RT: |
OUTCUE: " every child receives." |
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CU BILL ROPER |
Roper: For many of us in public health, AUTISM SPECTRUM DISORDER or A-S-D, as it is now more accurately described, may indeed be unfamiliar territory. It's an area where much of the expertise and experience in dealing with the condition lies OUTSIDE our profession. To help ANSWER your questions and address your concerns, we've brought in two experts. |
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CU JOSE CORDERO |
Joining us today is Dr.
Jose Cordero, Director of the |
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CU CRAIG NEWSCHAFFER |
Also with us is Dr. Craig Newschaffer, Associate Professor in the Department of Epidemiology at Johns Hopkins Bloomberg School of Public Health. |
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CU HUGH TILSON |
And as always, we have with us my colleague at U-N-C, Dr. Hugh Tilson, Clinical Professor of Epidemiology and Health Policy. Hugh, do you want to introduce a new feature we have on set? |
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CU HUGH TILSON |
Tilson: Yes, Bill, I have my computer live on-line and so I'll be checking on the questions and comments from our viewers as they come in. |
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CU BILL ROPER SS: Voice (800) 793 – 8598 Fax (800) 553 – 6323 TTY (800) 815 – 8152
SS: www.PublicHealthGrandRounds.unc.edu
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Roper: That's right, this is a LIVE INTERACTIVE program and we really want you to write us or call in your QUESTIONS and COMMENTS on this timely subject.
So please call us at 800 Our fax number is 800 We also have a TTY number 800 And, you can also submit a question at our website at www dot Public Health Grand Rounds dot U-N-C dot E-D-U, where Hugh will be monitoring. And now let's take a look at our OBJECTIVES for today's program. |
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TAPE: Cut – 3 Objectives RT: 0:31 |
OUTCUE: " children with ASD." |
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What is ASD? |
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CU BILL ROPER |
Roper: To start us off, let me ask you,
Hugh, to tell us about a meeting you had with a multi-disciplinary group
that's examining the whole issue of A-S-D.
What did you learn? |
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CU HUGH TILSON CG: Hugh Tilson, MD, DrPH |
Tilson: Bill, the group goes by
the acronym of CADDRE – isn't that neat.
It's short for Centers for Autism and Developmental Disabilities
Research and Epidemiology. It brings
together professionals with a multitude of different skills – clinicians,
epidemiologists, leaders in public health and many other specialists – who
are working collaboratively to try to find the CAUSES for autism, its
PREVALENCE and also effective means of DIAGNOSIS. Here's what they say about
the task ahead. |
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TAPE: Cut-4 CADDRE RT: |
OUTCUE: "the best of public health." |
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CU BILL ROPER |
Roper: That's a good overview of the issues we face. Let's now look at them in more detail. First of all the issue of PREVALENCE. Craig, are the numbers really going up? |
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CU CRAIG NEWSCHAFFER CG: Craig J. Newschaffer, PhD |
Newschaffer: Today there are definitely MORE CHILDREN diagnosed with autism. Since autism became a recognized category for special education classification in 1989, the number of children receiving special education classified as having autism has increased by about TWENTY-FIVE PERCENT per year. That said, unlike other childhood conditions such as asthma and diabetes, the DIAGNOSIS of autism is purely BEHAVIORALLY BASED. Also, we now understand that autism is a SPECTRUM disorder. So we now recognize both HIGHER FUNCTIONING individuals and SEVERELY IMPAIRED individuals as having autism. This means there is more of a chance that the changes in prevalence we see over time could at least be driven by changes in our understanding of the condition and how to diagnose it. However, a REAL RISK INCREASE is a possibility that needs to be explored. |
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SS: Prevalence · Autistic Disorder 10-20 per 10,000 · All ASDs 20-60 per 10,000 |
It's still hard to know EXACTLY what the TRUE PREVALENCE of autism is, but a plausible range for autistic disorder, the longer-recognized, more severe form, is probably somewhere between 10 and 20 per 10-thousand, and the prevalence of all A-S-Ds may be in the range of TWO TO THREE TIMES that. This is MUCH HIGHER than we thought it was just ten years ago. |
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CU BILL ROPER |
Roper: Thanks, Craig. Jose, what do we know about the causes of autism? |
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CU JOSE CORDERO CG: José F. Cordero, MD, MPH |
Cordero: One thing we have
good evidence for, and it was pointed out by the CADDRE scientist, is that NO
RESEARCH as of yet has been able to establish an ASSOCIATION between
CHILDHOOD IMMUNIZATIONS and AUTISM.
Three expert reviews released in 2000–2001 supported this, and similar conclusions were
reported by the Institutes of Medicine.
So it is good news that so far research has shown NO CAUSAL LINK
between autism and the M-M-R vaccine.
Still, we can't exclude the possibility that an association may be
found in a small subset of the population.
For this reason, RESEARCH in this area is ONGOING. |
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Beyond that, as one speaker pointed out, we do know since the twin studies of the early 80s, that there is a GENETIC component to the disorder. Autism is much more likely to co-occur in IDENTICAL twins than in FRATERNAL twins. However, while the genetic component to A-S-D is undeniable, the gene-finding studies are far from complete. NO GENETIC MODEL has yet met the challenge of consistently explaining autism's GENDER DISPARITY and the variable way it manifests itself. |
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CU BILL ROPER |
Roper: What about NON-INHERITED causes? If not vaccines, is there any indication that anything OTHER than genes could be a risk factor? |
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CU JOSE CORDERO |
Cordero: It's possible. In fact, the CADDRE group and other researchers will be looking very closely at whether there are any factors that could COMBINE with genetic predisposition to increase risk. These factors might come in to play during PREGNANCY, or perhaps early in life. There are some children with autism who develop NORMALLY during their first couple of years and then abruptly LOSE LANGUAGE and SOCIAL SKILLS. We call it regressive autism. But we must remember that the existence of this group doesn't mean there HAS to be some early-life, environmental risk factor for autism. It's entirely possible that regressive autism results from pathologic processes fully established at birth. |
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CU BILL ROPER |
Roper: Thanks, Jose. Since risk factor studies are still a work in progress, Craig, is there any practical PREVENTION STRATEGY now? |
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CU CRAIG NEWSCHAFFER |
Newschaffer: Given the lack of risk factor information, it's difficult to formulate preventive strategies for autism at the present time. The American Academy of Pediatrics currently recommends that parents of children with A-S-D be counseled about the increased risk in SUBSEQUENT children, estimated to be somewhere from THREE to NINE PERCENT. Since the genetic mechanisms behind autism appear to be very complex, it may be that even AFTER we've done more genetic research, it will still be a challenge to IDENTIFY families at particular risk. Also if research does uncover any ENVIRONMENTAL risk factors, it may well be that these are important ONLY in small GENETICALLY SUSCEPTIBLE subgroups. Nonetheless, the hope is that someday we will have some prevention strategies we can put in place. |
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Forging a Partnership 8:00 |
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CU BILL ROPER |
Roper: Thanks, Craig. Let's move on now to our case study. Hugh,
you recently visited |
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CU HUGH TILSON CG: Hugh Tilson, MD, DrPH |
Tilson: Bill, we did indeed discover a
truly remarkable partnership already in place to improve DIAGNOSIS and
TREATMENT OF AUTISM in the community in Miami Dade. It's a partnership in the spirit of the
larger Public Health system that involves the Health Department, the school
system, and the academic community.
What's UNIQUE about this collaboration are two components housed in
the |
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TAPE: Cut-5 RT: |
OUTCUE: " have a medical
home?" |
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CU BILL ROPER |
Roper:
Jose, in order to
support such partnerships as the one in |
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CU JOSE CORDERO SS: CDC ASD Initiatives · Population-based surveillance in 8 states · 6 centers of excellence in autism and developmental disabilities epidemiology SS: NIH ASD Initiatives · 5 centers of excellence in autism clinical and basic science research · Autism Coordinating Committee |
Cordero: Since 1997, the Department of Health and Human Services has placed a high priority on A-S-Ds. RESEARCH FUNDING for autism has gone up considerably, from ELEVEN to FIFTY-SIX million DOLLARS within the National Institutes of Health alone. At the same time, both the CDC and NIH have developed NEW INITIATIVES, building a federal foundation for the public health response to autism. As part of the Children's Health Act of 2000, CDC is supporting the development of population-based A-S-D SURVEILLANCE projects in eight states and has funded six centers of excellence in autism and developmental disabilities epidemiology to conduct surveillance and to begin a large, multi-centered autism case-control study. These CDC projects should provide more accurate A-S-D PREVALENCE estimates, and we hope they will lead to the discovery of MODIFIABLE risk factors. The Children's Health Act also charged the NIH to fund at least FIVE CENTERS of EXCELLENCE in autism clinical and basic science research, and to form an AUTISM COORDINATING COMMITTEE where representatives from five NIH institutes, the CDC, the Food and Drug Administration, and the U.S. Department of Education could regularly exchange ideas. |
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CU JOSE CORDERO |
In addition,
through the Individuals with Disabilities Education Act or "IDEA",
ALL STATES now receive FEDERAL SUPPORT for EARLY INTERVENTION programs that
provide early detection and coordinate intervention to infants and toddlers
with developmental delays. Additional
IDEA support helps fund evaluation and preschool placements for children with
disabilities aged three to five years.
Both of these programs, while not EXCLUSIVELY focused on autism, have
been an important means of raising EARLY WARNINGS that can lead to diagnoses
of A-S-Ds. In |
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CU BILL ROPER |
Roper: Thanks, Jose. It sounds like these programs can be a key
resource in PARTNERSHIPS developed at the state and local level. What do you think, Craig? |
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CU CRAIG NEWSCHAFFER SS: Early Intervention Programs Run by: · Health Dept in 26 states · Education Dept in 13 states · Human/Social Service Dept in 5 states |
Newschaffer: I think that's true. It's important to realize that these
programs can be and are organized differently from state to state. For example, the Early Intervention Program
is run through the health department in 26 states, including |
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Early Diagnosis 10:00 |
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CU BILL ROPER CG: William Roper MD, MPH |
Roper: Thanks, Craig. One of our objectives today is to identify the role that HEALTHCARE PROFESSIONALS need to play in addressing autism. And clearly that's one of the goals of the Miami Dade partnership. Hugh tells us how they're going about that. |
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CU HUGH TILSON |
Tilson: Well Bill, as Peter Mundy said, one of the three groups they're targeting is indeed the MEDICAL community. There, the PRIORITY has been EARLY DIAGNOSIS of children with autism and developing the necessary techniques and training that make it possible. Let's hear how they're doing that. |
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TAPE: Cut-6 Early Diagnosis RT: |
OUTCUE: " the earliest you can get them, the better
it is." |
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CU BILL ROPER |
Roper: A lot of discussion there about the need for a SCREENING TOOL. Jose, currently WHAT SCREENING TOOLS do we have available for testing YOUNG kids? |
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CU JOSE
CORDERO
SS: Autism Screening Tools · M-CHAT · Social Communication Questionnaire |
Cordero: The American Academies of Neurology and Pediatrics currently recommend that children FAILING ROUTINE DEVELOPMENTAL EXAMS be screened with either the M-CHAT, short for Modified Checklist for Autism in Toddlers, or the Social Communication Questionnaire. While these don't include direct observations of the child, they do ask parents questions of whether kids show SIGNS of this kind of behavior. |
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However, existing tools vary in the manner in which they are administered and the extent to which they have been validated. There are several things we need to do to come up with the best approaches. First, like with any other screening strategy, we need to carefully evaluate the EFFECTIVENESS of EXISTING APPROACHES as they are applied in the community. Next we need to be constantly INNOVATING and coming up with better tools. To this end, researchers are now closely following cohorts of infant siblings of children with autism as well as doing studies that compare pre-diagnostic videotapes of children with and without autism to see if there are behaviors that discriminate those with autism at VERY YOUNG AGES. |
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Given the inherent uncertainties of behaviorally-based screening, there's also a lot of interest in POTENTIAL AUTISM BIOMARKERS. One promising direction is to look for BIOMARKERS AT BIRTH, that may help discriminate between children LATER diagnosed with autism and those with typical development. One study did show differences between these groups of children although it DID NOT DIFFERENTIATE between autism and mental retardation. Still, this is an EXCITING area of research. |
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CU BILL ROPER |
Roper: Thanks, Jose. In the case we heard a lot about the CONTINUING DIFFICULTIES in putting early detection into practice. Craig, what can we do to IMPROVE things in that area? |
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CU CRAIG
NEWSCHAFFER
SS: (BUILD) Improving Early Detection · Increase awareness about autism and early intervention |
Craig: In addition to supporting the research Jose mentioned, we need to find ways to boost the efforts that exist IN OUR COMMUNITIES. For example, Early Intervention programs are limited in the extent that they can ACTIVELY reach out and screen kids. The programs are a resource to which pediatricians, nurses, pre-school teachers, and parents can refer kids with concerns. So we need to work to INCREASE AWARENESS ABOUT AUTISM and resources like the Early Intervention program in these groups. |
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SS:
·
Encourage more initial
developmental screening and referral to early intervention
SS: (BUILD) Improving Early Detection · Assure Early Intervention programs use latest techniques for ASD early-recognition SS: · Assure sufficient clinical expertise |
As many of the We then need to assure Early
Intervention
programs are aware of the latest thinking on and techniques for A-S-D
early-recognition. Next there has to be
sufficient pools of clinical expertise in the community to MAKE DEFINITIVE
DIAGNOSES. Helping to develop these
clinical resources and finding ways to improve access to them is also an
important challenge. |
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CU BILL ROPER
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Roper: One speaker made the point that EARLY DETECTION followed by EARLY INTERVENTION improves outcomes for children with the disorder. Anything you'd like to add to that, Craig? |
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CU CRAIG
NEWSCHAFFER
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Newschaffer: The research shows us that cognitive status still appears to be the single strongest predictor of functional outcome in children with A-S-Ds. But, it has been clearly demonstrated that BEHAVIORALLY-BASED INTERVENTIONS started EARLY IN LIFE can curtail problematic behaviors and foster communication and social skill growth for children REGARDLESS of where they fall on the autism spectrum. Nonetheless, there certainly is more room for work intended to DEVELOP and REFINE best practices – especially better TARGETING OF STRATEGIES to SUB-GROUPS OF CHILDREN with particular combinations of limitations or strengths. |
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Involving Parents 7:00 |
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CU BILL ROPER |
Roper: Thanks,
Craig. As we've heard a number of
people say, most PARENTS of children with autism are the FIRST to realize
that something IS wrong with their child even if they can't always define it
clearly. How is the |
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CU HUGH TILSON
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Tilson: Well, Bill, you're
right parents often do pick up the FIRST CLUES even if they don't know
EXACTLY what they're seeing. And for
that reason |
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TAPE: Cut – 7 A Parent's
Reaction
RT: |
OUTCUE: "and we need to help get the message out." |
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CU BILL ROPER |
Roper: Craig, if parents sense there's something DEVELOPMENTALLY WRONG with their child, as Marie-Ilene Whitehurst did, is there a CHECK LIST of SIGNS they can look for? |
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CU CRAIG NEWSCHAFFER SS: ASD Communication Indicators ·
Hasn't babbled,
pointed or made gestures by one year SS: · Hasn't spoken a word by 16 months SS: ·
Hasn't spoken a
two-word phrase by 2 years SS: · Doesn't respond to name SS: · Loses language or social skills |
Newschaffer: I wouldn't call it a checklist but there are some specific behaviors that may indicate a young child is at risk for A-S-D. The first set is related to COMMUNICATION. If the child hasn't BABBLED, POINTED or MADE GESTURES by ONE YEAR. If he or she HASN'T SPOKEN A WORD by 16 months Or hasn't spoken a TWO-WORD PHRASE by 2 year. If the child doesn't RESPOND to his or her NAME Or LOSES LANGUAGE or
SOCIAL SKILLS. |
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SS: Other Indicators · Poor eye contact SS: · Doesn't know how to play with toys SS: · Lines up toys or other objects SS: · Unusually attached or interested in particular toys/objects SS: Other Indicators · Doesn't smile socially SS: · Has odd movement patterns SS: ·
May appear at times to have a hearing impairment |
OTHER INDICATORS that may be significant are: If the child shows POOR EYE CONTACT Or DOESN'T KNOW HOW TO
PLAY with toys Or LINES UP TOYS or OTHER
OBJECTS Or is UNUSUALLY ATTACHED or INTERESTED IN PARTICULAR TOYS or objects. If the child DOESN'T SMILE
SOCIALLY Or has ODD MOVEMENT PATTERNS Or may APPEAR at times to have a HEARING
IMPAIRMENT.
All of these could be
early signs of A-S-D or OTHER DEVELOPMENTAL PROBLEMS and are worth some
follow-up, ESPECIALLY if they occur in combination.. |
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School & Beyond 7:00 |
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CU BILL ROPER CG: William Roper MD, MPH |
Roper: Thanks Craig. Since there is no cure for autism, DETECTION is really just the BEGINNING in these individuals' lives. Hugh, what is Miami Dade's APPROACH to children once they move into the school system? |
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CU HUGH TILSON |
Tilson: Bill, the SCHOOLS are indeed the
THIRD LEG of the stool that supports children with autism, along with parents
and the medical and health community.
And that's very much the approach that |
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TAPE: Cut-8 School & Beyond RT: **Give Tilson his laptop!*** |
OUTCUE: "…
not just in my
home."
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CU BILL ROPER |
Roper:
So Craig, the CHALLENGE of autism extends BEYOND school to adulthood. |
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CU CRAIG NEWSCHAFFER |
Newschaffer: That's correct. The |
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Lastly, the case also dramatically underscores the fact that here's a
disorder for which the LION SHARE of the intervention is NOT MEDICAL, but
rather it's EDUCATIONAL. So public
health approaches to autism will require a stronger that usual partnership
with Education Departments and other educational groups because that's where
much of the expertise lies. The shoe
is to some extent on the other foot for Public Health. We're used to having
the expertise and disseminating it to others.
So now in addition to moving ahead with our own research, we need to
help COORDINATE and IMPROVE ACCESS to the knowledge and expertise of others.
|
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CU BILL ROPER |
Roper:
Thanks, Craig. Jose, what do you see as the important CHALLENGES for PUBLIC HEALTH in dealing with autism in school and beyond? |
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CU JOSE CORDERO |
Cordero: Being able to identify
children with autism early in childhood is really the key. As the |
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Q&A Discussion 8:00 |
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CU BILL ROPER SS: Voice (800) 793 – 8598 Fax (800) 553 – 6323 TTY (800) 815 – 8152
www.PublicHealthGrandRounds.unc.edu |
Roper:
Thanks, Jose. In a moment it'll be YOUR turn to ask questions and tell us about YOUR EXPERIENCES and BEST PRACTICES. So let me remind you how to contact us. our number is 800 Our fax number is 800 We also have a TTY number 800 And, you can also submit a
question at our website at www dot Public Health Grand Rounds dot U-N-C dot
E-D-U. |
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SS: Discussion Forum |
Also, I'd like to remind you about our Discussion Forum on the WEB. Content experts from C-D-C and U-N-C will facilitate the on-line discussion. THAT will start TODAY and run through July 3rd You're invited to ASK questions and SHARE your best practices. Just go to w-w-w dot Public Health Grand Rounds, one-word, dot u-n-c dot e-d-u and click on the "Discussion Forum". |
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SS:
Resources |
While you're there, you can also to access our ON-LINE Resources Page. You'll find a selection of LINKS to useful resources on the web. |
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Hugh you've been checking our website. Do you have any interesting questions for us? Tilson: [QUESTION] Roper: We have a call from [STATE]. Go ahead, please. |
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Wrap-Up 7:00 |
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CU BILL ROPER |
Roper: Unfortunately that's all the calls we have time for. From PRIOR grand rounds, we know MANY OF YOU will have ADDITIONAL questions and comments. So please join us at our website discussion forum. If you're looking for information, check out our Resource Page. And now I'd like to ask each of our guests to share a few FINAL WORDS about our topic today, autism spectrum disorder. Let me start with you, Jose. |
73. |
CU JOSE CORDERO |
Cordero: CDC is committed to
UNDERSTANDING the CAUSES of AUTISM, and finding the best treatments for
autism. ALL of us need to work to
educate ourselves and others about the benefits of developmental screening
and early intervention to help children with autism develop and reach their
full potential. I would also like to
emphasize the importance of EXPANDING EPIDEMIOLOGIC SURVEILLANCE for autism
throughout the |
74. |
CU BILL ROPER |
Roper: Craig, what's your TAKE HOME MESSAGE? |
75. |
CU CRAIG NEWSHAFFER |
Newschaffer: As an EPIDEMIOLOGIST, I certainly agree with Jose that epidemiologic SURVEILLANCE is key. It will give us the improved data we need for program planning. ETIOLOGIC RESEARCH is also crucial because this is the work that might give us CLUES to prevention. I think the |
76. |
CU BILL ROPER |
Roper: And Hugh, what words would you like to leave us with? |
77. |
CU HUGH TILSON |
Tilson: Well, Bill, I couldn't miss the chance
to THANK our terrific PUBLIC HEALTH GRAND ROUNDS team. THANKS too to all the
good people in |
78. |
TAPE: Cut-9 Final Words RT: |
OUTCUE: " step in the right direction." |
79. |
CU BILL ROPER |
Roper: As public health professionals, we find ourselves uniquely placed to steer the community as a whole toward a more positive approach to autism spectrum disorder. Many of us see children at an early age. With appropriate training, we can RECOGNIZE the SIGNS of A-S-D and help insure EARLY DETECTION. At the same time we need to FOSTER PARTNERSHIPS with the medical community, educational departments and academic institutions which have shown to be most effective in identifying and treating A-S-D. By taking these actions, Public Health can become a better partner in the community. |
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SS: Website Address www.PublicHealthGrandRounds.unc.edu SS: |
Before we go, my thanks to all our guests for joining us today. I'd also like to thank you, our viewers, for being with us. We know you represent the FULL SPECTRUM of community public health partners from teachers and parents to public health nurses. Let us know what you think of today's program by going to our website and filling out the online evaluation form. The address is: W-W-W dot Public Health Grand Rounds, one word, dot U-N-C dot E-D-U If you want to receive continuing education credit, you must complete an on-line EVALUATION form. If you have any difficulties, please e-mail us at GrandRounds, one word, at S-P-H dot U-N-C dot E-D-U. |
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SS: Website Address www.PublicHealthGrandRounds.unc.edu |
Again, when you visit our WEBSITE, take advantage of our Resource Page and the DISCUSSION FORUM where you can get additional questions answered and share your own ideas about our program. This forum will be open between now and July 3rd. |
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SS: Public Health Grand Rounds
Disease, Disaster, and Detection: Partnering with Public Health Laboratories
|
Public Health Grand Rounds will be back on September 26th with another important topic. Our program is titled Disease, Disaster, and Detection: Partnering with Public Health Laboratories and we'll be looking at LOCAL HEALTH LABORATORIES and their IMPACT on the public's health. So please mark that date on your calendars. |
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Until then, on behalf of everyone at C-D-C, the Public Health Training Network and the School of Public Health at the University of North Carolina at Chapel Hill, I'm Bill Roper wishing you a good day from Atlanta. |
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SS: Production Credits SS: Partners SS: A Special Thanks To: (1) SS: A Special Thanks To: (2) SS: A Good Day From |
Music & Closing Credits Soul Ballet – "Soul Ballet" Cut #10 – "Round 12:01"@:27in |