Mr. Bono. Before I begin, I would like to give you the
perspective of an autistic parent.
Right now, I am more nervous about where my son is, because
I do not see him, than I am about being before you today. That
is a constant worry in the mind of a parent of an autistic
child.
My name is Scott Bono, and I live in Durham, NC with my
wife Laura and my children, Dylan, Ashley, and Jackson. I have
read the testimony and heard the stories of other parents in
similar circumstances--change that to ``identical
circumstances.'' Our story is not much different.
We had a perfectly normal pregnancy and birth of our son.
In the first 16 months of life, he learned language, played
with toys, appropriately began pretending skills, initiated
contact with his twin sisters, and could light up a room with
his wonderful personality. He was brighter than most, and he
could even tell the difference between a Concord jet and a 727
at such an early age.
On August 9, 1990, Jackson would begin a journey into
silence, bewilderment, and a medical enigma. That was the day
he received his MMR immunization. He would not sleep that
night. In the days to follow, he would develop unexplained
rashes and horrible constipation and diarrhea. After eating, he
would experience projectile vomiting that would scare him.
His normally very healthy body was being ravaged by an
invader. Over the next weeks, he would slip away, unable to
listen or speak. He retreated into what we now know as autism.
He became allergic to everything in his world. His immune
markers skyrocketed.
What was the reason for this change? It is my sincerest
believe that it was that shot.
The single biggest challenge in raising an autistic child
is getting appropriate, informed, and competent medical
services. As I sit before you today, autism is, as it has been
for decades, viewed as a psychological disorder. I cannot help
but wonder about and get frustrated by the lack of medical and
physiological intervention for all of these children.
I live just 3 miles from Duke University Medical Center,
yet for one of the most effective treatments for Jackson's
gastrointestinal problems, I drive 12 hours for a procedure
that takes 5 minutes. I have been doing this for the past 2\1/
2\ years and will be making this trip 13 times this year alone.
To dismiss Jackson's acidic diarrhea for 7 years because
``autistic children sometimes do that'' is just what happened.
That is just unacceptable. As my son's advocate, I know that he
is not receiving the medical treatment he needs, and I believe
that as long as autism is regarded as a psychological disorder,
this will always be the case. We need and seek responsible,
effective and caring physicians who do not dismiss the
patient's ailments as ``behaviors,'' but look at them as
treatable medical conditions with appropriate medical
intervention.
This is what I believe to be the single biggest problem in
getting group insurers to pay for medical services. Insurers
must pay according to their contract. It is the law. But if a
doctor says the visit to his office is for the treatment of
autism when the autistic child is being seen for
gastrointestinal distress, the insurer will not pay the claim.
If, however, the diagnostic code for the visit shows that it is
for gastrointestinal distress, the bill will be paid. The
diagnosis of autism is used as a shield by some insurers to
deflect the responsibility of paying for medical and remedial
treatment for these children's medical problems.
The expenses of seeing Jackson's needs are overwhelming--
hundreds of thousands of dollars over the past 8 years. After
going through all of our savings and retirement, we continue to
accumulate debt to meet his educational and therapeutic needs
and his medical needs.
Our priority right now is to get him well. There are other
costs besides financial. Jackson is on a very strict diet that
takes time and money. If he eats offending foods, he gets a
rash, has diarrhea, and we will not sleep for the next 5
nights. His behaviors will worsen.
How do I put a cost on not sleeping for 6 years? How do I
put a cost on attention not paid to my daughters because I am
seeing to the needs of my son? How do I put a cost on locking
every door and window at all times for fear of him wandering
out of the house?
Financial burden is only part of it. It is only part of the
picture that families with autistic children face. If the price
of eradicating measles, mumps, rubella, or any other illness is
thousands of autistic children or health-impaired children, is
it worth it? Have we simply traded acute illness for chronic
disease? Is that worth the price?
Autism has reached epidemic proportions, and the numbers
are still growing. We must allocate funds to find the cause and
the cure. The U.S. Department of Education indicates the
increase in autism is 900 percent in the 8 years since 1992. If
tooth decay went up 900 percent, we would be scrambling for
answers.
The statistics can no longer be ignored. Thousands of
parents who claim their children were developing normally until
the MMR vaccine should no longer be ignored. We all cannot be
wrong.
As elected officials, you hold the public trust, the
essence of faith in Government. Your challenge is to uphold
that trust.
Thank you.
Mr. Burton. Thank you very much, Mr. Bono.
Note/Warning:
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.
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