Mr. Burton. OK.
We will now proceed with our witnesses. As a practice,
especially since we are talking about something as important as
the various problems that have been occurring with you folks
with autistic children, I would like to ask everybody to rise.
On our first panel, we have Mr. Kenneth Curtis, Mr. James
Smythe, Ms. Shelley Reynolds, Ms. Jeana Smith, Mr. Scott Bono,
and Dr. Wayne Dankner.
Would all of you raise your right hands, please?
[Witnesses sworn.]
Mr. Burton. Please be seated.
Mr. Curtis, would you like to start? What I would like to
ask, because we have 19 witnesses, and this is a very big
hearing today, is if you could try to confine your remarks to 5
minutes. Some of the doctors who have technical expertise that
they want to express will be allowed a little latitude, but if
you could stick close to 5 minutes, we would really appreciate
it.
Mr. Curtis, would you like to start?
STATEMENTS OF KENNETH CURTIS, CATONSVILLE, MD; JAMES SMYTHE,
CARMEL, IN; SHELLEY REYNOLDS, BATON ROUGE, LA; JEANA SMITH,
DENHAM SPRINGS, LA; SCOTT BONO, DURHAM, NC; AND DR. WAYNE M.
DANKNER, SAN DIEGO, CA
Mr. Curtis. Certainly. Mr. Chairman, all of you, first of
all, thank you for this opportunity to speak on behalf of my
son----
Mr. Burton. Would you pull the mic a little closer? The
mics do not pick up as well as we hope.
Mr. Curtis. Sure. Leave it to the radio guy to mess up the
microphone.
Thank you again for this opportunity to speak on behalf of
my son, my family, and children with autism nationwide; but
mostly I am speaking on behalf of my son, because this is
really his story.
Autism does not announce itself in the delivery room. When
our son Morgan Scott was born, he looked like a Sharpei dog--he
was wrinkled from head to toe. Things were sort of storybook
for us at that time. We had a girl and a boy, a mom and a dad,
and life was kind of like a picnic. But the clouds were rolling
in, as it were.
Slowly, little drops of doubt began to fall. We wondered
about the way he liked to watch Disney videos over and over, or
how he would spin around and make strange noises and look at
things out of the corner of his eye; the way he liked to line
up his toys. Drop after drop--we wondered, and we waited to see
what would happen.
He did not talk, and most of the time, he did not even seem
to hear us. So we worried some more, and we wondered, until all
of these little drops were like a downpour--and of course, we
had to take cover.
Our doctor suggested a hearing test, but his ears were
fine. He just would not talk. We tried speech therapy, but he
still would not talk. Even with all of these odd behaviors, my
son was a happy enough kid. He was loving, affectionate, he was
ticklish, stubborn--just like any kid--but he would not talk.
Finally, when Morgan was a little more than 2 years old, we
had a word for it, and the word was more terrifying and
confusing than any of the things we were dealing with at the
time. Of course, the word was autism.
But what did that mean? Of course, we thought of ``Rain
Man,'' but we also thought of all the horrible stories you hear
about kids who repeatedly bang their heads against the wall, or
bite, scratch, and sit in a corner, rocking and hugging
themselves. Is it possible that this could be our little boy?
It did not seem real--but obviously, it was.
Morgan was diagnosed as ``moderately autistic,'' a term I
have always thought to be a bit like being ``moderately
pregnant.'' So we began to immerse ourselves in information. We
were determined to learn everything possible about autism--and
when I say ``we,'' I really mean my wife Kimberly. You have
never seen a woman on a mission until you have seen a mother
determined to save her child. There is no match for a mother's
love. She read, she researched, she investigated, while I tried
to come to terms with the idea that I might never be able to
shoot hoops with my son.
Before long, we had a plan. We opted for the one-to-one
intensive ABA therapy program developed by Dr. Lovass at UCLA.
We spent thousands of dollars, wrangled with the school system,
hired lawyers, lived in my grandmother's house to save on rent,
and we began teaching our son in-home.
For 5 years, Morgan had between 30 and 40 hours a week of
one-on-one therapy. At age 4, my son had more college friends
than most fraternity brothers. He learned to read a little, to
spell a little, to use the toilet--and most importantly, he
learned how to listen to people, and he even began to talk a
little bit.
I am a radio guy--I talk for a living--and the irony of
having a son who does not know how to communicate with words is
not lost on me. I know there are things that my son wants to
say to me, and as he gets older, I can look into his eyes and
see the frustration and the confusion. There is a little boy
inside of him somewhere, and it is as if he is lost.
This is really what it is like. It is like being in the
mall with your child, and you look down and discover he is not
there anymore--that sickening feeling you get in the pit of
your stomach. Except that every once in a while, I catch a
glimpse of the real boy--the way his eyes light up when you
bring the Christmas tree home; the way he smiles when he jumps
into the pool, or the way he sits perfectly still, enraptured,
when he got to see the symphony. He loves music, he loves
animals, he loves trains, books, swings, ice cream, and even
his family, of course.
But he cannot tell me his favorite color, or how his day at
school was, or what hurts when he falls off the swing set. He
still has not figured out how to express or reveal himself. And
he does not seem to understand why this is so important to us.
I want to know why my son is locked inside himself. Is
there a genetic disposition? Is it environmental? Is it
something in the water? Do pesticides cause it--preservatives;
antibiotics; immunizations; Nutrasweet; the time he fell and
hit his head? It sounds crazy, but these are the things we have
all heard and thought about, and the truth is we have no idea
why our son is autistic, and we have to accept that.
But we love our son so much that we can never give up hope
that he will 1 day carry on a conversation with us or even just
say, ``Hi, Dad,'' when I come home from work.
Morgan is a truly beautiful person in his own right just as
he is right now. I have never met anyone, and I doubt I ever
will, who lives more in the moment than my son. He is
affectionate, imaginative, and even humorous sometimes. And I
have learned more from him than I have from any other single
person in my entire life. He is autistic, and that is just the
way he is.
But not everybody is as lucky as we are. Morgan is not
aggressive or self-injurious like a lot of individuals with
autism. He is 8 years old. I have had a lot of time to come to
terms with this. Even so, the frustration of dealing with
autism is nearly eclipsed by the frustration and the lack of
concrete information about this disorder.
Autism used to be considered rare, the kind of thing you
see in movies or read about in books, but it never actually
happened to anyone you knew. In January of this year, the
Autism Society of America estimated that autism had increased
from 15 out of every 10,000 individuals to 1 in 500. And the
repercussions of this increase are so far-reaching.
These children will need specialized education and
appropriate care for the rest of their lives. Are we honestly
ready for this? Are our schools equipped to handle this
increase? This overwhelming surge in this disorder is not just
going to affect individual families. This is going to impact
our community and the entire world in which we live.
My son is a beautifully colored thread in the fabric of my
family. But even so, 1 in every 500 families should not have to
live with this disorder. And what if these numbers keep
increasing?
So here I am today, wearing the only suit that I own,
discussing my son before the legislative arm of the ruling body
of the greatest Nation in the world. Believe me, testifying
here today is one of the most important things I have ever
done, and with all due respect to the tremendous body of work
before each of you, I would like to think that it is a very
important day for you as well.
Thank you.
Mr. Burton. Thank you very much, Mr. Curtis.
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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