Welcome to 2008
After
sending out December's Flash, I realized that a bunch
of your mail servers were refusing this newsletter, thinking
it was spam. So today I'm trying a new distribution method
that I hope will result in more of you actually receiving
this newsletter. So for some of you, "Hi! Long time
- no see."
KindTree has no big fundraiser scheduled for this year.
Why, you ask? Well, we try really hard to keep our costs
low and run programs that produce income and are largely
self supporting. That helps a lot.
Not everything pays for itself, though. This year we
failed to win a Lane Arts Council grant, and are hoping
your online and mail in donations will help fill the
gap. "Autism
Artism 2008" will be coming later this year - we're
still planning.
We've set a goal of $2000 to help support these artists
through framing their pieces and displaying them at
a professional gallery, complete with a Gala Opening.
Your check for $200 will be a great help, and you will
receive a beautiful 5x7 matted art piece from the show
and be listed as a sponsor.
Please show your support for these artists, give them
that great feeling of pride and self worth, make their
day. Click on the 'DONATE NOW' button to make a donation,
or visit www.kindtree.org
Thanks - Tim Mueller
THANKS FOR YOUR SUPPORT
KindTree recently received donations from the Wentworth
Foundation, Ruth and Ken Ross, and the Eugene Downtown
Lions Club.
Thank you all.
NEWS
The Oregon Autism Alliance grassroots
campaign
The Oregon Autism Alliance is
a grassroots campaign focusing on
legislated policy regarding autism spectrum disorders.
Currently, we
are launching a tour in January, 2008 to educate parents
state-wide
about insurance coverage for autism treatments as legislated
by SB1
and HB2918. The education tour (See
the Events for an ASO-LCC
sponsored presentation) will explain this legislation
to families and what it means in terms of coverage for
autism treatments. We will explain the claims process,
and the claims denial process
including appeals and external review. It is important
for consumers
to know how to interpret the language of their insurance
contracts.
We are working closely with the Insurance
Division to track progress,
and statistics of SB1 and HB2918. We plan to use this
tracking data
to formulate new or amended legislation for the 2009
session, and to
work with stakeholders in providing access to coverage
for autism
treatments.
We are compiling evidence-based research
and expert
testimoy to support inclusion of treatments, and treatment
providers
for autism in individual, group, OMIP, OHP, and small
business
contracts. Many self-insured employer plans are already
leading the way.
Comments and questions can be posted
at
oregonautismalliance@yahoo.com.
Autism advocates are encouraged to serve as contacts
by legislative district so that legislators hear
directly from constituents for Oregon Autism Alliance
action alerts.
Please consider volunteering at oregonautismalliance@yahoo.com
Contributions can be mailed to:
Oregon Autism Alliance
225 Gangnes Dr.
Talent OR 97540
Janel Salazar
(541) 324-6660
Mental
retardation, autism symptoms in mice corrected
BEIJING, (Xinhuanet) -- Researchers have successfully
corrected key
symptoms of mental retardation and autism in mice, which
could be a
potential treatment for sufferers, according to a study
in Neuron magazine
on Thursday.
Researchers from the Picower Institute for Learning
and Memory at the
Massachusetts Institute of Technology (MIT) carried out
the tests on mice
aimed to correct "Fragile X syndrome," which
affects some 100,000 Americans.
"These findings have major therapeutic implications
for Fragile X
syndrome and autism," said lead author Mark Bear,
director of the Institute.
Fragile X syndrome is the most common inherited cause
of autism and
mental retardation, which can be passed down on the mother's
genes and
affects one in 4,000 boys.
It is caused by the loss of a gene, known as the "fragile
X mental
retardation protein" (FMRP), which is believed to
act as a brake on
synthesizing proteins in the brain.
Researchers sought to prove that the loss of this protein
allowed mGluR5
to act unchecked, which stimulates protein synthesis.
The tests proved that cutting the amount of mGluR5 in
mice helped to
reduce the abnormalities caused by the loss of the other
key protein, such
as the number of epileptic fits.
"Fragile X is a disorder of excess synaptic connectivity,
protein
synthesis, memory extinction, body growth, excitability
-- and remarkably
all these excesses can be reduced by reducing mGluR5," said
Bear.
The work indicated that a certain class of drugs could
have the same
effect with interference with mGluR5, the researcher
noted.
But, these drugs are not yet approved, which are expected
to go into
human safety trials in America next year.
Read more...
The Guilt Factor
When a child is diagnosed with autism, parents develop
a new vocabulary. Conversations contain words
like ABA, receptive and expressive language, discrete
trial training, eye contact, floor time and biomedical
approaches. Parents share their joys, their fears,
their strategies and their dreams. In fact, almost
everything is easily discussed except one thing – THE
GUILT FACTOR.
While it’s proven time and again that parents
are NOT responsible for their child’s
autism, many parents have this nagging little feeling
somewhere deep inside that they are to blame. If
they don’t feel they caused the autism, they
typically feel that their child would be doing better
and progressing faster if they just put more effort
into it.
One can only equate it to preparing for the Bar exam. No
matter how much you study, you could always do a little
more. Simple every day activities result in great
emotional stress for an autism spectrum parent. It’s
not long before the “guilt factor” spills
over into every area of life.
Read more here...
See one woman's struggle with guilt below.
Nerve
Cell Gene Linked to Autism
Article: By Michael Smith, North American Correspondent,
MedPage Today BALTIMORE
The risk for autism appears to increase in the
presence of a common genetic variation on chromosome
seven, especially when the condition is inherited
from the mother, researchers here said. |
|
AUTISM
SPECTRUM MAGAZINE - FREE...
The
fourth edition for 2007 was just released and
features Alex Plank, founder of the website, www.WrongPlanet.net which serves
as a great sounding board for the Aspie community. Use
the navigation buttons from the top toolbar. From
the Table of Contents, click on the article
name to jump to that page. www.theautismperspective.org
|
Action
Points
* Explain to interested patients that
the causes of autism remain unclear, although about
0.6% of the population is autistic.
* Note that the disorder is complex, but includes social
disability, communication impairment, repetitive behaviors,
and restricted interests.
* Explain that this study, along with two others, appears
to link a gene on chromosome seven to the disorder.
The variant is a single nucleotide polymorphism (SNP)
that's found in 36% of the alleles of chromosome seven,
according to Aravinda Chakravarti, Ph.D., of Johns
Hopkins, and colleagues.
Dubbed rs7794745, the variant lies within a gene called
contactin-associated protein-like 2 (CNTNAP2), Dr.
Chakravarti and colleagues reported online in the American
Journal of Human Genetics.
The gene, which encodes a protein involved in nervous
system cellular interactions, had previously been associated
with other neurological disorders, including cortical
dysplasia-focal epilepsy and obsessive-compulsive disorder.
Also, two other papers in the journal reported links
between autism and CNTNAP2. The reports come a day
after researchers linked errors on chromosome 16 to
the disorder. (See: Chromosome 16 Mutations Linked
to Autism)
"
CNTNAP2 is an excellent candidate gene for autism," Dr. Chakravarti said.
"
It encodes a protein that's known to mediate interactions
between brain cells and that appears to enable a crucial
aspect of brain-cell development," he added. "A gene variant that altered either of these
activities could have significant impact."
In a cohort of 72 families with multiple affected
children -- a total of 148 affected offspring and 292
other family members -- the researchers performed a
genome-wide scan for significant associations.
To reduce variation in the volunteers, the researchers
required that the affected offspring meet a strict
criterion of autism, rather than the broader "autism spectrum disorder."
The gene scan found that a substitution of thymine
for adenine at rs7794745 was significantly more common
among those with autism (at P<2.14x10-5).
To confirm the finding, the researchers performed
a separate genome-wide scan of 1,295 parent-child trios
-- this time with a broader definition of autism --
and again found a significant over-transmission of
the T allele (P<0.005) among the affected offspring.
Given the marked sex difference in autism -- four
times as many boys as girls are affected -- the researchers
also looked at which parent contributes the T allele
to an autistic child.
The analysis found that the transmission frequency
of the paternal T allele was 0.53 and the frequency
of transmission of the maternal allele was 0.61, a
difference that was significant at P<0.001, Dr. Chakravarti and colleagues
said.
"This is a common variant," Dr. Chakravarti said. "People inherit it all the
time. Our finding that it's associated with autism more often when it's
inherited from mothers is intriguing, but needs to be replicated."
Meanwhile, using a language-based criterion -- age
at first word -- another group of researchers found
that a separate region of CNTNAP2 was associated with
autism.
Daniel Geschwind, M.D., Ph.D., of the University of
California at Los Angeles, and colleagues found that
a SNP dubbed rs2710102 was significantly associated
(P<0.028) with a delayed onset of speech.
In another study, researchers led by Matthew State,
M.D., Ph.D., of Yale, found several rare variants in
CNTNAP2 that appeared to be linked to autism.
Taken together, the three studies provide "unequivocal evidence" that
disrupting CNTNAP2 leads to a subtype of autism spectrum disorder, said
Dietrich Stephan, Ph.D., of the Translational Genomics Research Institute in
Phoenix, in an accompanying commentary.
It's now reasonable to say that people with autism
combined with mutations in CNTNAP2 have "type 1 autism," Dr. Stephan said.
The study was supported by the National Institute
of Mental Health. Dr. Chakravarti did not report any
potential conflicts.
*Primary source: American Journal of Human Genetics
Source reference:
Arking DE, et al "A common genetic variant in the neurexin superfamily
member CNTNAP2 increases familial risk of autism" Am J Hum Gen 2008; DOI:
10.1016/j.ajhg.2007.09.015.
*Additional source: American Journal of Human Genetics
Source reference:
Stephan D, "Unraveling autism" Am J Hum Gen 2008; DOI:
10.1016/j.ajhg.2007.12.003.
*Additional source: American Journal of Human Genetics
Source reference:
Alarcon M, et al "Linkage, association, and gene-expression
analyses identify CNTNAP2 as an autism-susceptibility
gene" Am
J Hum Gen 2008; DOI: 10.1016/j.ajhg.2007.09.005.
*Source: http://www.medpagetoday.com/Pediatrics/Autism/tb/7917
The Word
is Out About the Autism Plague
Canada has ruled three
times that autistic people are in fact a plague, and
that describing us this way is not only not harmful
to us, but is truly beneficial, and a sign that non-autistics
with good intentions are helping us. Indeed, autistics
should be grateful to have such dedicated advocates
raising public awareness of our plague-like nature
on our behalf. What!?!
Read
more here...
"Do not worry about your problems with mathematics,
I assure you mine are far greater." - Albert
Einstein |
|
|
What's
New at KINDTREE.ORG
Submit Your Story
KindTree needs your stories about
the positive side of living with autism for our
Autism
Forum 2008
The Spectrum Speaks
how to submit here..
May 1 Deadline
Call to Artists
Submit your original art to
Autism Rocks Art Show
"Autism Artism 2008"
April 1 Deadline
Do it here...
Support
the Artists
Valentines Day
is Coming
Artist Suzie Noel in the news
Excitement, energy and enthusiasm
are pretty much the norm at the Bull Mountain
home of Bonnie and Michael Duncan-Winn, who have
an autistic daughter, Suzie Noel.
Bonnie and Michael probably lavish more praise
on Suzie than average parents would on their
kids, but Suzie is blossoming under their system
of consistency, persistency and praise.
In early December, the couple spent a week at
the Option Institute, which is affiliated with
the Autism Center of America in Sheffield, Mass.,
learning about the Son-Rise program, which teaches
parents how to communicate with and improve the
socialization skills of their autistic children.
The couple adopted Suzie four years ago through
the Oregon state foster-care system.
Suzie had been neglected as an infant and toddler,
and Bonnie recalled her first months with Suzie,
now 7, as similar to tutor Anne Sullivan learning
to communicate with the deaf, mute and blind
Helen Keller.
Now
Suzie is a regular chatterbox and an accomplished
reader, but it took all of Bonnie and Michael’s
wits and patience to turn her around.
Read more here...
|
|
| Jan
30, 2008
Confrontation
Management & Personal
Safety
for Parks and Recreation Workers
1:30 p.m. – 3:30pm
Willamalane Community Recreation Center
250 S. 32nd St, Springfield, OR
Cost: $15 - ORPA Members,
$20 Non-Members
Sponsored by ORPA Recreational Sports Section
(RSS)
TEL: (503) 325-ORPA (6772); FAX: (503) 325-2350
E-Mail: frank@orpa.org
February
28, 2008
ASO-LCC chapter meeting
Asperger Counseling Clinic (Nan Lester) 943 Washington,
6:30 pm
Information re:
-
state insurance regulations
- autism community center progress
more info here...
|
| February
19 & 21
Training Your Home Care
Worker workshops
Come improve your skills in:
Better understanding your needs
Recruiting, interviewing and
screening Homecare Worker
applicants
Selecting the best Homecare
Worker for the job
Creating an Employment
Agreement
Training your Homecare Worker
Conducting evaluations and
providing feedback
And more.
LILA in Eugene
Questions regarding the training can be address to
Kathy Jenness Via email at kjenness@lilaoregon.org or phone at (541) 607-7020.
February
28
Pearl Buck Open House
3690 W 1st Ave 11-2pm
Come see the new face of our Capital Campaign.
Call for more info: 484 4666
April 12
“Wonderland” the
next Bridgeway House Players Production
More about Bridgeway House events here...
April
24-25
Autism EI Conference, Medford, OR
Presentations include:
- Autism: How to Teach Parents
Strategies to Enhance their Child’s
Social Communication Skills
- Building Listening Skills
- Putting Relationships in the Forefront - Understanding
the Individual Differences and How We Can Support
the Strengths in the Child
And many more. Info here...
|
| May
30-31, 2008
Oregon Disabilities
MEGA CONFERENCE
Educate, Empower,
Inspire, Connect, Bend
Or.
more here...
|
| September
4 – 7, 2008
National Institute on
Recreation Inclusion
Registration and Housing Open
April 2008
Visit www.nrpa.org/niri for more information or
call 800.626.NRPA (6772)
Save the Date!
Hilton Eugene and Conference Center, Eugene, Oregon
October
22 - 24
Healthy Brain Conference
Key Impacts and Interventions
in Eugene, OR
SAVE THE DATE
|
ASO
Respite Program:
Take a Break on ASO
Read
more here...
Autism:
The Musical
This excellent documentary follows five kids with autism
as they join The Miracle Project, a musical theater production
designed to give these kids an environment where they
can be themselves—as opposed to their everyday
lives, which are constantly under the strain of being
manipulated to conform them into the status quo as best
they can. But this film is, naturally, more about the
kids and their parents than the production itself. With
alarmingly high rates of autism, it's bittersweet to
see how these children cope with their condition. More
harrowing are the emotional journeys of the parents,
who see marriages ripped apart, struggle with depression,
and suffer from constant anxiety over how to maintain
their children's dignity and safety in a world that undervalues
their very existence. MARJORIE SKINNER
Read more here...
Live Rent Free!
My
son is 23 and developmentally disabled. I purchased
a 2 bedroom condo for him to live in, completely
furnished. He is unable to manage daily with his
current level of life skills. I am offering free
rent to live in the second bedroom and assist with
his learning of life skills. He has no bad habits,
is a sweet young man with a developmental age of
about 7. He works 5 days a week, and is independent
on LTD. I am willing to negotiate two weekends free
from his care a month for the care taker. I live
locally and will offer support, guidance, etc, as
needed.
Apartment is in
Westmoreland
Village
, on bus lines and bike path, and convenient to U of O. All amenities included,
weight room, spa, cable TV, washer/dryer, own furnished bedroom, outdoor patio.
This is a great opportunity for a student, or someone with good skills. Experience,
references and criminal background check required--don
'
t bother to contact me if you don
'
t have references or experience working with the cognitively disabled. Will require
minimum of 6 month commitment for this care. May have other employment as well,
care is not 24/7.
Person will be working with him on skills such as hygiene, medication reminders,
budgeting, cleaning, cooking, planning for leisure activities.
Reply to:
job-537813943@craigslist.org
Research:
No vaccine-autism link
Tuesday, January 08, 2008 | 2:15 PM | ABC News
A new study may be the latest nail in the coffin
of a theory that draws a link between the mercury-containing
vaccine additive thimerosal and autism.
The research is the latest to contradict concerns over
childhood vaccinations as a possible cause of autism
-- concerns that have gained publicity in the past decade
as the number of children diagnosed with the disorder
climbs steadily in the United States.
Because vaccinations are mandatory for all children
at a certain age, some parents and doctors believe that
the mercury once found in many childhood vaccines may
contribute to the development of autism. However, so
far a number of large scientific studies have shown no
association between thimerosal and autism.
Read
more here... |
