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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
ASD?” 

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8 replies »

  1. I’m a mother of a son with Pervasive Developmental Disorder. I am also a Research Nurse in Psychiatry. I know that there are genetic markers being found that point a finger as to the cause of ASD, both for the lower and higher functioning forms. However, what science doesn’t know is what causes a gene to be expressed. I am a believer of the Thimerisol theory as being at minimum a contributor of ASD. It is a known neurotoxin. Why take the chance of giving it to children who are already at risk (genetic, ASD or other neuro-psychiatric diseases)? I wrote to the CDC last year, informing them that while I was pregnant I drank copious amounts of orange juice. I have done some researching and found that OJ is preserved with Thimerisol. Maybe we also need to look into what pregnant mothers are eating and drinking? We tell pregnant women not to drink alcohol or eat a lot of fish but are not looking into foods that are contaminated with neurotoxins. What are we waiting for? Thank you for listening… Cindy

  2. PLEASE EXCUSE ME IF I SEEM LIKE WE HAVE BEEN BUDS FOR AWHILE,BUT I WANTED TO LET YOU KNOW ,ALTHOUGH I DON’T HAVE ANY CHILDREN WITH AUTISM AND BI POLAR DISORDER, I DO FEEL YOUR PAIN AS A PARENT. THEY WERENT ACTUALLY MINE ,BUT, I RAISED AND TREATED THEM AS MY OWN. AND IF YOU EVER NEED ANOTHER SIGNITURE FOR A PETITION YOU CAN ALWAYS COUNT ON ME BUDDY. I DO FEEL YOUR PAIN AND IT GETS ME A BIT EMOTIONAL WHEN I SEE CHILDREN OR EVEN AN ADULT WITH A DISABILITY. YOU COULD SAY ” I WEAR MY HEART ON MY SLEEVE AND LIKE I SAID IF THERS ANYTHING WITHIN MY POWERS TO HELP YOU AND YOUR SPOUSE,PLEASE FEEL FREE TO E – MAIL ME ANYTIME. GOOD LUCK IN GETTING FUNDING AND RECOGNITION . THE GOVERNMENT HAS A RESPONSIBILIT TO TAKE CARE OF IT’S OWN. KEEP THOSE GLORIOUS WORDS IN MIND ” WE THE PEOPLE ” PUT THEM IN OFFICE, WE CAN TAKE YOU OUT……. MAY GOD WATCH OVER AND PROTECT THAT WONDERFUL FAMILY OF YOURS.
    sign:
    ROB

  3. Dear Friends and Fellow Activist:
    I read all of the information with both interest and compassion. Most of the information just made me sad, others parts just frustrated me.
    I am old enough to have tried to latch on tom the Coat Tails of individuals running for Office, only to have wasted my time and I am sure there of you that can relate.
    In our wonderful U.S. we have (50) States and you would be amazed at the number of people that we consider “powerful”, “celebrities”, “royalty” and of course politicians at all levels in every state that have a disability or have loved ones living with a disability.
    Having key people informed is never the problem, the problem is that those who know that can afford to care for themselves and their loved ones, are not suffering the lack of services, benefits and resources that the general public must suffer and endure.
    How do we change that is a million dollar question.
    I do not have the specific disability in question but my list of disabilities would fill too many pages to list. Fair to say, I am in a Hospital Bed 85% of the day.
    …but despite my disabilities, I serve on countless Disability Committees, Boards and Councils.
    …and I fought through and am still fighting for all of the benefits and services that I need to maintain a fairly moderate quality of life.
    As we’ve learned as an example (not to be insulting at all) with the Jerry Lewis Telathon, the Michael J, Fox Foundation and the Christopher Reeves Foundations, hundreds of millions are raised annually but this is a small pie of hundreds of organizations doing the same thing, yet the number of disabled continue to climb every Census and we continue to lose loved ones or watch as loved ones struggle with their disability.
    Enough is enough !
    Peace Be With You All

  4. As a mother with a special needs kid, I “don’t get it” from this article. I think you should explain more about the daily impact and how this shapes your existence as well as the life plan/ scope for your child. “Comorbid diagnosis” is not something many people understand.
    I don’t know if you ever filled out all the Katie-Beckett deeming waiver, but I’d use some of that data!
    How much cash, how many tears, how many sleepless nights in hospitals and missed workdays get you to a diagnosis that won’t give you any clarity anyway?
    Will my child ever be able to attend the public school I live across the street from? why should 65% of my property taxes pay for another child’s education while I pay more than half my income in order for mine to attend a school at all?
    In a 22million dollar renovation at the school she could go to if the chose not to ignore us, why weren’t there any new classrooms or teachers for kids with special needs? why should they suggest a 2.5 hour bus ride for an appropriate school if I live in the center of the city?
    Is it important for kids to learn a second language (or be carted to the class)when they cannot speak their first language yet?
    Will my child have a friend?
    Will she stop bedwetting?
    Will she understand the idea of birthcontrol pills now that she is menstruating? The doctor says I must put her on them “in case something happens to her”.
    Kids her age study the holocaust, she doesnt know what a germany is.
    Will she be reading by the time she graduates high school at 22?
    Is she happy?
    Who is she?
    My child has a bright future because we accept her on all levels. She also goes to an amazing school that I pay for. Her Whole life is better because her school teaches her. She has friends, she learns more than I ever thought she would, she’s better at some sports than I am. Life is not based on scales and ages and levels. I don’t know what “normal” kids are like and nowadays I can hardly relate to them. I had to almost leave society to find a cure for the feeling of homelessness that disability causes. I am glad I took those steps!

  5. “ASD is very difficult to diagnose.”
    It sure is. Unfortunately, the solution has been simialr to diagnosing ADD- when in doubt, you’ve got it. It’s become a catch all for every kid who is developmentally disabled, retarded, odd, etc. whose parents also don’t “get it.” It’s an unfortunate situation.

  6. Matthew, I’m sorry to hear of your frustrations with the health, education and political systems. Here is a list of ways to engage.

  7. As far as I know, Thimerosol was discontinued as a component in vaccines in 2001, since then there has been no decline in Autism rates. I’m rather skeptical about the immunizations claim, but also recognize that its definitely a very concerning problem, there certainly should be more research done on identifying possible causes and effective treatments.

  8. My son is 1 in 150 also. I believe it was the vaccinations. He was progressing fine until a bad reaction to the shots he was given. I think that giving a little toddler a slough of vaccines is too taxing on their little systems. If this were a cancer we’d be doing something about it but since it doesn’t kill anyone we are left to deal with it. I truly believe that the thimerosol has a huge part in the increase in autism!

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