FEAT DAILY NEWSLETTER
Sacramento, California http://www.feat.org
January 23, 2002
News Morgue Search www.feat.org/search/news.asp
·
M.I.N.D. Institute Begin Work With Families On
California Autism Study
·
Functional Neuroimaging And Childhood Autism
·
Simon Baron-Cohen Responds to Criticism over Asperger
Conjecture
·
Reader’s Posts
Parents of 1,000 California children enrolled in the state’s
developmental-disabilities system are receiving letters in the mail asking them
to participate in a study examining an unprecedented increase in autism in the
state.
The M.I.N.D. Institute at UC Davis is conducting the study
to help explain the reasons behind a 273 percent increase in the number of
autistic children entering the state’s 21 regional centers between 1987 to
1998. The upsurge was highlighted in a 1999 report by the California Department
of Developmental Services (DDS), which operates the centers. As a result of that
report, the state Legislature and Gov. Gray Davis directed DDS and the M.I.N.D.
Institute to identify factors that may be responsible for the increase, funding
the effort with a $1 million appropriation.
The latest DDS figures available show that 2,331 persons
entered the regional center system with a diagnosis of autism during 2001. That
amounts to an average of six new individuals a day.
Opinions vary among researchers and parents as to the
reasons behind the increase, said UC Davis pediatric epidemiologist Robert S.
Byrd, who is the principal investigator on the study. Byrd is asking parents to
describe what they think caused their child’s disorder as part of the study.
“In this study, we are examining a number of
possibilities, including whether there is an actual increase, whether the
criteria used to diagnose autism has changed over time or if by applying today’s
diagnostic standards, children have been misclassified,” Byrd said. “We also
are determining whether the number of families with autistic children moving
into California accounts for some of the observed increase in autism cases.”
Byrd said his team is enrolling 1,000 children and
their families—
500 children diagnosed with autism and 500 diagnosed with
other developmental disabilities who have been randomly selected from the DDS regional
centers—to participate in the study. The two groups of children are divided
into two age groups, based on year of birth. The first group was born between
1983 to 1985 (15 to 17 years old) and the second between 1993 to 1995 (5 to 7
years old).
As part of the study, researchers are recording if and how
the characteristics of children reported with autism in California have changed
over time. They also are asking about specific medical or developmental problems,
such as mental retardation, allergies, gastrointestinal disorders, pregnancy
and birth complications.
“We are also asking about regression, that is whether
children seemed normal at birth and had relatively normal development to a
certain point, then lost the ability to do things that other children who are
developing normally might be expected to do,” Byrd said. “Parents and
caregivers frequently report these problems, which have not been systematically
studied. Our research should be able to estimate how much these occur and whether
they have changed over the years between the two age groups we are evaluating.”
As part of the study, the researchers are reviewing the
children’s regional center records. All participating families are completing a
questionnaire while families of autistic children are taking part in an autism
diagnostic interview at their regional center.
Results of the statewide study will be compiled and
presented to the California Legislature in early summer.
Established in 1998 through the efforts of four Sacramento
families whose children have autism, the M.I.N.D. Institute at UC Davis is a
unique multidisciplinary research institute devoted to the study of autism and other
neurodevelopmental disorders.
* * *
http://link.springer.de/link/service/journals/00247/contents/01/00570/
(1) Service de
Radiologie Pédiatrique, Necker-Enfants Malades Hospital, 149 rue de Sèvres,
75015 Paris, France
(2) Service Hospitalier
Frédéric Joliot, DRM, DSV, CEA, Orsay, France
(3) INSERM Unité 316,
CHU Bretonneau, Tours, France Presented in part at 37th Annual
Congress of ESPR, Lisbon, May 2000
Abstract. Childhood autism is now widely viewed as being
of developmental neurobiological origin. Yet, localised structural and functional
brain correlates of autism have to be established. Structural brain-imaging
studies performed in autistic patients have reported abnormalities such as
increased total brain volume and cerebellar abnormalities.
However, none of these abnormalities fully account for the
full range of autistic symptoms. Functional brain imaging, such as positron
emission tomography (PET), single photon emission computed tomography (SPECT)
and functional MRI (fMRI) have added a new perspective to the study of normal and
pathological brain functions.
In autism, functional studies have been performed at rest
or during activation. However, first-generation functional imaging devices were
not sensitive enough to detect any consistent dysfunction. Recently, with improved
technology, two independent groups have reported bilateral hypoperfusion of the
temporal lobes in autistic children. In addition, activation studies, using
perceptive and cognitive paradigms, have shown an abnormal pattern of cortical
activation in autistic patients.
These results suggest that different connections between
particular cortical regions could exist in autism. The purpose of this review
is to present the main results of rest and activation studies performed in
autism.
© Springer-Verlag 2001
>>> PROFESSORS, TEACHERS, TRAINERS
<<<
Autism Continuing Education for
Students Now Available
FEAT Daily Newsletter, NO FEE
For the Knowledge Only, No CEUs
* * *
[It started with a piece, “The Geek Disease” in a trendy
pop culture magazine called Wired last December. This straight-faced revenge of the nerds article offered, amongst
other things, an anecdotal portrayal of a high concentration of Asperger Syndrome
people being in the vanguard of Silicon Valley’s wealthy Dot.Com-Modes.
[Then more recently appearing in Edge online magazine and
then two days ago in this newsletter, was an intended fanciful piece picking up
on the theme and carrying it further to lofty conjectures about a revolutionary
evolution of a new generation of genetic autistic offspring. The newfound wealth
and stature of this disabled, but clever class of citizens resulted in their
easier matings like never before. Thus,
almost proving once again, that love, with a little boost by wealth, conquers
all. What makes this mundacious conjecturing significant, is it’s public
proponent: a well-known and established, ivory-towered autism expert Simon
Baron-Cohen of Cambridge.
[In a pointed essay sarcaustically entitled, “Geeks Get
Lucky”, which appeared here yesterday, noted autism and vaccine reform activist
Mark Blaxill took Baron-Cohen to task for his musings.
[Finally, here Simon Baron-Cohen responds to Blaxill in
protracted and referenced detail. -LS]
First, you of course realise that neither Edge, nor Wired
Magazine, are scientific journals. And that my contribution to each of these
recently are not scientific contributions. I recognize that too.
In the case of Edge, the invitation was to contribute a
question for the forthcoming year. Nothing more. So what I did was raise a
question, and then mere speculation. I did not attempt to answer the question.
I simply explored the question along the lines of “suppose this were true?”
If I were to test various answers to the question, I would
design a series of experiments, which as you realise would take years and years
to answer. And even then, such research could fail. We both know that.
So, such speculation should be treated as nothing more
than that. Speculation can of course
give rise to new hypotheses to test, or it can be ignored. But it should
certainly not be treated as established fact. The testing of these new
hypotheses could of course take years, if not decades.
I don’t take Wired Magazine as reporting reliable data
either, of course. The article there about Silicon Valley was mere anecdote,
written by a journalist, not a scientist. And my contribution to the same issue
was nothing more than a magazine interview. So please do treat the content of both
of those pieces with a large dose of salt.
But of course speculation doesn’t come out of nowhere.
There are some data which offers fragments of clues for the idea of a link
between talent in “systemising” (such as is needed in maths, physics,
engineering, computer science, music, linguistics, or history, for example) and
autism. In Edge and in Wired there was no scope for presenting a bibliography
of such clues, but now that you have responded, I can at least give you a
handful of the references here. They are listed at the end of this document.
But none of these directly addresses the speculation about the impact of the
airplane and the computer. These remain mere speculations.
Much more importantly, I am very concerned that these
speculations may have caused offence. As you may realize, having dedicated my
life to attempting to both understand and help the situation of people with
autism spectrum conditions, the last thing I want to do is cause any offence to
them or their long suffering families. So, if any offence has been taken, please
accept my apologies unreservedly. But I am committed to trying to understand
what is causing autism, including what is causing the apparent increase in
cases.
So is my question and speculation in Edge “bad science”?
Well, it is not science at all, and nor was it intended to be. The science, if
someone chooses to do it, is yet to be done. It is a discussion paper, and
nothing more. Some of the speculation may be hard to test scientifically, but
one study that needs to be done is to look not at the rate of autism among people
of mixed cultural marriage (since mixed cultural marriage could occur for a whole
host of reasons) but rather at the rate of mixed cultural marriage in married
adults with Asperger Syndrome. This is predicted to be higher than an
appropriate comparison group.
Is my speculation in Edge “malicious” ? I certainly hope
not. I am one of the few academics who is frequently in the media arguing that
we should celebrate autism as part of the individual differences in the
population, and stress the positive qualities and not just the disabilities. I
want to see a world in which people with autism can feel accepted and valued.
I should say that my team was one of the first to report,
in the scientific literature, a study of the new rates of autism (Scott, F, Baron-Cohen,
S, Bolton, P, & Brayne, C, (in press) Prevalence of autism spectrum
conditions in children aged 5-11 years in Cambridgeshire, UK. Autism), identifying a rate of approximately
1 in 200 children, as compared to the traditional figure of 4 in 10,000. We
also took these findings to the House of Commons All Party Parliamentary Group
as soon as the study was complete, so as to raise awareness among MPs of this
important fact, rather than waiting for the usual time-lag in scientific
journal publishing before disseminating these results. I agree that the
scientific community has been far to slow to acknowledge this change in
prevalence, though it takes time to carry out a study of such changes.
I think you are absolutely right that the apparent rise in
rates of autism could be due to a whole host of factors, and regressive autism
(which you mention) may be one of these. Like my piece in Edge, this is also speculation,
and one that would be interesting to test systemically. Other possible factors
of course simply include better awareness of the range of the spectrum, as I
mentioned in Edge.
Regarding your remark that our attempts at developing a
screen for autism at 18m old have failed, I consider that we have learnt alot
from that study. For one thing, we have learnt that the absence of the key
behaviours of joint attention and pretend play carry a risk for autism rate of
over 80%. This is an important discovery, and means that some children with autism
can be picked up on the basis of them not showing these behaviours. But we have also learnt that the presence of
these key behaviours does not mean you will not develop autism. Indeed, the
screen as it stands also misses about 80% of children with autism spectrum
conditions. So we are back to the drawing board, and will be spending the next
years fine-tuning the screening methodology until the screen works more
successfully. That is of course the nature of science.
Back to offence. I have to admit that I found the headline
in Wired Magazine highly offensive, referring to autism and Asperger Syndrome
as “geek syndrome”. It saddens me that you have picked up this terminology in your
email too. I don’t find it useful and I think it could perpetuate discrimination
which I am keen to overcome with more positive language and a more positive
focus.
Equally, my speculative piece is by no means meant to be
an indicator of a eugenicist or social engineering viewpoint. It saddens me even more that you imagine my
hope would be that people with the genes for autism or Asperger Syndrome should
not have children. My beliefs could not be more different to these. My view is
that autism spectrum conditions should be destigmatised in society, and that we
should do everything we can to make it easier for people with autism spectrum
conditions to have access to the same rights, opportunities and quality of life
as people without autism spectrum conditions.
With best wishes
Simon Baron-Cohen
Reference for some of the clues for the
link between autism and
systemising skills:
1. Baron-Cohen, S,
(1997) Are children with autism superior at folk physics? In Wellman, H, &
Inagaki, K, (eds) The emergence of core domains of thought: Children¹s
reasoning about physical, psychological and biological phenomena. New Direction for Child Development Series,
75, 45-54.Jossey-Bass Inc.
2. Baron-Cohen, S,
Wheelwright, S, Stott, C, Bolton, P, & Goodyer, I,
3. Jolliffe, T, &
Baron-Cohen, S, (1997) Are people with
autism or
Asperger Syndrome faster than normal on the Embedded
Figures Task? Journal
of Child Psychology and Psychiatry, 38, 527-534
4. Baron-Cohen, S,
Bolton, P, Wheelwright, S, Scahill, V, Short, L,
Mead, G, & Smith, A, (1998) Does autism occur more
often in families of physicists, engineers, and mathematicians? Autism, 2, 296-301.
5. Baron-Cohen, S,
Wheelwright, S, Stott, C, Bolton, P, & Goodyer, I,
Wolff, Brausberg and Islam. Autism, 2, 98-104.
6. Plaisted, K,
O¹Riordan, M, & Baron-Cohen, S, (1998) Enhanced visual search for a
conjunctive target in autism: A research note.
Journal of Child Psychology and Psychiatry, 39, 777-783.
7. Baron-Cohen, S,
Wheelwright, S, Stone, V, & Rutherford, M, (1999) A mathematician, a
physicist, and a computer scientist with Asperger Syndrome: performance on folk
psychology and folk physics tests. Neurocase, 5, 475-483.
8. Baron-Cohen, S,
& Wheelwright, S, (2001) The Autism-Spectrum
Quotient: Evidence from Asperger Syndrome/high-functioning
autism, males and females, scientists, and mathematicians. Journal of Autism and Developmental
Disorders, 31, 5-17.
9. Baron-Cohen, S,
Wheelwright, S, Scahill, V, Spong, A, & Lawson, J,
(2001) Are intuitive physics and intuitive psychology
independent? A test
with children with Asperger Syndrome. Journal of Developmental and Learning
Disorders. ------------- Simon Baron-Cohen Professor of
Developmental
Psychopathology Autism Research Centre University of
Cambridge Departments
of Experimental Psychology and Psychiatry Downing St Cambridge
CB3 9JL
* * *
Family looking to move to MD , or bordering areas of VA or
PA. Looking to get information on
schools, services and medicaid/waivers.
Also looking to get different experiences from different counties,
positive and negative.
Calgary, Alberta.
Needed for four hours Sundays, individual to help HFA ten
year old with homework and community trips. Would suit rehab or education
student. Miamishooves@hotmail.com
I am relocating from New Mexico to Smithville, Texas, this
summer. Anyone
with information of available services for a profoundly
autistic 12 year
old, (city or statewide), would be greatly appreciated. I am
only familiar
with services that New Mexico
offers. witsiepe@earthlink.net
Looking for videos on ABA / Discrete Trial Teaching to use
to work with my
son (3 ½) who is PDD.
I would love to be able to borrow - but would also
like a list of the best available. I live in the Chillicothe, Ohio area and
there are very little resources.
Wendy Fout toddwendynoah@bright.net
San Juan Capistrano, CA Family is looking for weekend tutor
to join home
program. 8 year old
nonverbal boy. Work on play therapy,
self help and
community outings.
Holidays/summers extra hours available.
Great program.
email: DAWCFP@aol.com
FAX: 949-489-8377
Looking for a lawyer who is experienced with the new suits
being filed for autism believed to be related to the MMR shot and don’t know
where to turn.
I have read my sons medical records and strongly believe
these two things
are related to one another.
Alice Fitzmorris alicedj@netzero.net
We are seeking special ed info in Caloosa County, CA. We have a 7 ½ year
old Autistic/Downs child who is non verbal. The school in
Three Rivers,
CA/Tulare county have taken us to fair hearing for placement
outside LEA
with a 1+ hr bus ride.
We are looking at alternatives in case we lose this
case. conev@thegrid.net
For Individuals, organizations, non-commercial and
commercial
>> Send your posting, only 60 words please, posting@feat.org
no charge <<
>> DO SOMETHING ABOUT AUTISM NOW <<
Subscribe, Read, then Forward the FEAT Daily
Newsletter.
To Subscribe go to www.feat.org/FEATnews
No Cost!
Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org
Michelle Guppy
Catherine Johnson PhD
• Ron Sleith •
Kay Stammers • Edward Decelie
UNSUBSCRIBE: FEATNews-signoff-request@LIST.FEAT.ORG
ALL
INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR
GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE
KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED
AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION WHETHER OR NOT TO
VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU
ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.