June 29, 2014

The Honorable Rand Paul M.D.

1029 State Street
Bowling Green, KY 42101

Dear Senator Paul M.D.,
My name is Heather White and I reside at Redacted, Kentucky. I am a health care
professional and mother of a child with autism (age 10).
I am writing you today to lend insight into Autism CARES Act of 2014 (S. 2449), which
allocates funds to the Interagency Autism Coordinating Committee (IACC) earmarked
for autism research. IACC sets the tone in autism research, and structures their
research goals based upon other government agency reports such as the Institute of
Medicine (IOM). The IACC strategic plan include statements; Initiate studies on at
least ve environmental factors identied in the recommendations from the 2007 IOM
report Identify and standardize at least three measures for identifying markers of
environmental exposures Determine the effect of at least ve environmental factors
on risk for subtypes of ASD (Rice, C., 2010). Those of us in the autism community are
in line with these goals but IACC has repeatedly neglected research allocations into
these areas. In fact, according to a 2013 Government Accountability Ofce (GAO)
report regarding IACC allocated research grants, this committee between the years
2008-2012 coordinated 1,206 autism research studies funded by the taxpayer ($1.2
billion) where 1,018 had overlapping purposes, and results (GAO, 2013). HHS
response to the GAO report was equally concerning. They appear to be focused
more on the way they are portrayed (wasteful spenders) then taking the criticism and
moving forward in science and understanding (GAO, 2013, pg. 75). There is a
disconnect between these federal agencies, the current understanding of autism, and
the needs of the affected families.
Autism science must diversify and refocus on understudied areas that impact autism
families. We know now that autism is epigenetic, creating chronic disease including;
oxidative stress (neuroexcitotoxicity), mitochondria dysfunction, immune
dysregulation/inammation (immunoexcitotoxicity), decreased methylation,
gastrointestinal disease, and salience network hyper connectivity (Rossignol, D., Frye,
R., 2014; Anthes, E., 2013; Essa et al., 2013; Theoharides et al., 2013; Kang, E., 2013;
REDACTED
FROM THE DESK OF
AUTI SMRAWDATA
Gorrindo et al., 2013; Goh et al., 2014; Rose et al., 2012). Another important element
to consider when thinking of autism research regards the 54% regression into the
disorder (University of California - Davis Health System, 2011). Scientic areas of focus
should include;
Autism and gastrointestinal disease, and interventions
Environmental impacts and regressive autism
Autoimmune interventions
Food allergies and autism
Brian inammation, and interventions
Immunomodulatory therapies
BioMed... BioMed... BioMed...
Yeast and fungal infection among those with autism
Identify environmental risk factors and facilitate prevention
Demographics and active surveillance
Case management protocols
Much of this would be covered in the 2010 IACC strategic plan, yet is being
purposefully ignored. One autism researcher, Dr. Mary Catherine DeSoto
(specialization in Developmental Psychology and Cognitive Neuroscience) has been
denied IACC grant allocations regardless that her proposals are outlined in their own
plan.
Further, Tom Insel M.D. who resides over IACC admitted in the recent hearing
Examining The Federal Response To Autism Spectrum Disorder that he only spends
10% of his time focused on autism related subject matter. This is who the U.S.
government is in-trusting tax dollars via Autism CARES Act of 2014 (S. 2449) to
earmark grants for autism research. IACCs actions facilitate a narrow view regarding
autism causation and recovery, which has directly correlated with Insels focus (early
detection). The majority of the affected families efforts are placed after that point in
time such as environmental cause/treatment, biomedical intervention,
supplementation , and overlapping co-morbid disease (which is largely undiagnosed
and untreated).
Moving forward the autism families and organizations that I am afliated with along
with my own urge you do defund and disband IACC, which has demonstrated
irresponsible wasteful spending of taxpayer dollars. I am instead supporting the
Autism Policy Reform Coalition (APRC) who are promising real solutions in the gaps in
autism research. Autism numbers continue to climb with the most recent prevalence
rates being 1:68 eight year old children in 2010. So my ten year old son is not even
included in the most recent statistics. We could be doing so much better than this, will
you help us?
Sincerely yours,

Heather White
References
Anthes, E. (2013). Autism brains are overly connected, studies nd. SFARI. Retrieved
from http://sfari.org/news-and-opinion/news/2013/autism-brains-are-overly-
connected-studies-nd
Essa et al. (2013). Excitotoxicity in the pathogenesis of autism. Neurotox Res. Retrieved
from http://www.ncbi.nlm.nih.gov/pubmed/23065398
GAO. (2013). Federal autism activities: Better data and more coordination needed to
help avoid the potential for unnecessary duplication. Untied States government
Accountability Ofce. Retrieved from http://www.gao.gov/assets/660/659147.pdf
Goh et al. (2014). Mitochondiral dysfunction as a neurobiological subtype of autism
spectrum disorder. JAMA Psychiatry. Retrieved from https://
archpsyc.jamanetwork.com/article.aspx?articleid=1859135
Gorrindo et al. (2013). Enrichment of Elevated Plasma F2t-Isoprostane Levels in
Individuals with Autism Who are Stratied by Presence of Gastrointestinal Dysfunction.
PLoS ONE. Retrieved from http://www.plosone.org/article/info%3Adoi
%2F10.1371%2Fjournal.pone.0068444
Kang, E. (2013). Prenatal inammation linked to autism risk. National Institutes of
Health. Retrieved from http://www.nih.gov/news/health/jan2013/niehs-24.htm
Rice, C. (2010). The Interagency Autism Coordinating Committee (IACC) Strategic
Plan. U.S. Department of Health & Human Services. Retrieved from http://
r.search.yahoo.com_ylt=A0LEVzgPOLBTSEIAVkJXNyoA;_ylu=X3oDMTEzOWg4OWU
2BHNlYwNzcgRwb3MDMgRjb2xvA2JmMQR2dGlkA1ZJUDQ2N18x/RV=2/
RE=1404086417/RO=10/RU=http%3a%2f%2fwww.hsi.gatech.edu%2fatl-autism
%2fsites%2fdefault%2fles%2fIACC_Strat_Plan_2009.pdf/RK=0/
RS=KX4Ufbc6j5DLGcEVjwLU9aoF1QM-
Rose et al. (2012). Evidence of oxidative damage and inammation associated with
low glutathione redox status in the autism brain. Translational Psychiatry. Retrieved
from http://www.nature.com/tp/journal/v2/n7/full/tp201261a.html
Rossignol, D., Frye, R. (2014). Evidence linking oxidative stress, mitochondrial
dysfunction, and inammation in the brain of individuals with autism. Frontiers in
Physiology. Retrieved from http://journal.frontiersin.org/Journal/10.3389/fphys.
2014.00150/abstract
Theoharides et al. (2013). Focal brain inammation and autism. Journal of
Neuroinammation. Retrieved from http://www.jneuroinammation.com/content/
10/1/46
University of California - Davis Health System. (2011). Boys with regressive autism, but
not early onset autism, have larger brains then age-matched healthy counterparts,
study nds. Science Daily. Retrieved from http://www.sciencedaily.com/releases/
2011/11/111128152410.htm