POLICY: Why isn’t more being done about ASD? By John Whitmer

One in 150 children is diagnosed
today with Autism Spectrum Disorders (ASD).  ASD is a neurological
and immune deficiency disorder that affects people’s behavior, communication,
and socialization.  ASD is genetic—in other words, children are
born with ASD.  It is passed-down from parents, and siblings have
a greater chance of having ASD if another has it.  There are also
environmental triggers.  Symptoms of ASD closely resemble heavy
metal poisoning such as exposure to mercury.  There is no cure
for ASD, it is a life-long condition.  ASD is very difficult to
diagnose.  ASD is a spectrum of disorders, including specific diagnoses
of Autism, Asperger’s Syndrome, Rhetts Syndrome, Child Disintegrative
Disorder (CDD), and Pervasive Developmental Disorder-Not Otherwise Specified
(PDD-NOS).  No two people with Autism have exactly the same characteristics. 
Some have language, other do not.  Some with Asperger’s Syndrome
are brilliant; others have a comorbid diagnosis of mental retardation. 
Some will be fully included into school and work places; others will
always live at home or in institutions.  Skeptics emphasize the
difficulty in diagnosing ASD and changes to the classifications of diagnoses
as evidence of an overzealous culture and of inflated numbers. 
I should know, I was skeptical too.

But ASD is real.  I should
know, my son is the one in 150.   

When my wife and I received
the diagnosis from the University of California at Davis’s Medical
Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute,
we were shocked.  I was in disbelief.  I soon realized, however,
that excusing or ignoring the signs was not going to make my son better. 
So my wife and I learned all that we could to educate first ourselves,
then our family, and then our community.  We have fought for and
received the early intervention that my son needs.  He is doing
great and is fully-included in school.  In fact, our greatest challenge
now is explaining to skeptics that there is something “wrong” with
my son.  Some just don’t get it.   

Some of those who don’t get
it are researchers, health care providers, and service providers. 
I attended a session on early diagnoses of eleven-month old babies at
the M.I.N.D. Institute’s “Summer Institute,” which is an annual
conference attracting researchers, physicians, service providers, and
some parents from around the world.  At the session we watched
a video that captured how infants with ASD do not have joint attention. 
It showed a baby sitting on her mother’s lap not responding when a
blanket was put over her head.  Most babies will pull the blanket
off.  This one just sat there.  Her behavior was obviously
atypical; it caused the entire audience besides myself to laugh openly. 
I didn’t laugh because I saw the tear form in the mother’s eye. 
You see, I knew what the mother was thinking and feeling.  It hurts,
it’s raw, and you want everybody to understand and to help.   

And here is the litmus test
for truly understanding ASD—those who have a family member with ASD
will be fighting back tears as they read this and those who don’t
won’t.  I should know.  Before my son’s diagnosis I had
could care less what ASD was.  Now it’s my life.

Others who don’t get it are
school officials.  They are concerned with what they call “encroachment.” 
Providing special educational services—aids, speech therapists, occupational
therapists, etc.—costs a lot of money.  Some studies have suggested
it costs as much as $30,000 dollars per child per school year. 
That means if a school has 1,500 students, ten will be diagnosed with
ASD and the school will have to provide $300,000 in annual services. 
Schools can’t afford that but they are required by state and federal
law to provide whatever services are outlined in each student’s Individualized
Educational Plan (IEP).  Therefore schools have two choices: provide
what each student on the spectrum needs by taking money out of the general
budget (“encroachment”) or resist providing services.  In a
cost-saving move, a few large school districts in my town formed a consortium
to provide their own services for children with special needs instead
of paying the county school district for these services.  This
meant that the county could no longer provide these services and closed
its programs.  Small school districts now had to pay the consortium
to serve their students.  This happened with no parent input. 
One poorly advertised and poorly attended parent information meeting
was held.  In it a few parents asked over one hundred questions
about the transfer.  Promises were made to answer these questions
but were not delivered.  At the Special Education Local Plan (SELPA)
meeting that decided to approve the transfer, I pleaded with the members
(who were all school district appointees and mostly administrators)
not to make a decision without parents’ input.  I was told, “Trust
us, we know what we are doing.”  They didn’t get it.

Others who don’t get it are
political leaders.  After that SELPA meeting I went home and, for
the first time, wept for my son.  I realized that try as I might
as a father, I might not be able to provide the help that he needs. 
I made a promise to him not to give up.  My first endeavor was
to get a parent onto the SELP board as a voting member.  My efforts
were foiled by the director of SELPA who thought it a bad idea. 
I went to my state legislator who thought it a good idea and wrote a
letter to the county superintendent of schools asking for it to be implemented. 
However, the county superintendent could do nothing without the support
of the SELPA members, who also thought it a bad idea.  I went to
my congressman asking for his support in this endeavor only to be told
that it was a state matter not a federal one.  I asked my congressman
to support legislation providing more money for research on ASD, only
to be told that he did not like telling the Department of Health and
Human Services how to spend its money.  I have gone to each presidential
candidate asking for them to incorporate ASD into its political platform
only to be told, in essence, that it was not an important campaign issue
for them.

Some of those who do get it
are in the media.  They have written front-page investigations
into ASD.  Their reports have appeared on local and national television. 
However, reporters are not keeping researchers, health care providers,
service providers, school officials, and politicians accountable. 
They are not consistently asking: “Why isn’t more being done about

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