Funding Autism Research
A hearing was held on progress made since the subcommittee’s April 17, 2007, hearing on autism in the United States.
Dr. Insel talked about autism research initiatives the the National Institutes of Health and various statistical analyses associated with research.
He was followed by a panel of parents who testified about their experiences with autistic children and treatments for the disease
Senator Durbin. A few miles away from you live—-
Mrs. Colston. I can’t move there.
Senator Durbin [continuing]. The schools cannot provide the
basic care that these children need. I think, I want to salute
again my chairman, it sounds like I’m doing my best to get on
his good side, but he had been a national leader on IDEA from
Mrs. Colston. He has been, thank you.
Senator Durbin. We’re lucky to have him.
Thanks, Mr. Chairman.
[The statement follows:]
Prepared Statement of Senator Richard J. Durbin
As a United States Senator, I hear from thousands of people in my
State of Illinois. But no stories are as powerful as those of a parent
who is worried about their child. Whether the worry is because of the
fear of having to pay for their child’s upcoming educational debt, the
angst of having their child abroad in a war that seems to have no end,
or the uneasiness of having a child with autism and not knowing what
the future holds for him or her.
As we have heard today, autism is a severe neurological disorder
that affects language, cognition, emotional development, and the
ability to relate and interact with others. Current estimates suggest
that over 1 million Americans suffer from some form of autism,
including more than 24,000 children in my State of Illinois. For
unknown reasons, the number of children diagnosed with autism has
skyrocketed in recent years, from one in 10,000 children born 10 years
ago to approximately 1 in 150 children born today–making autism the
fastest-growing developmental disability in our Nation.
Last year, I heard from a woman named Ellen whose story represents
so well the similar sense of constant worry that I hear from so many
others. Ellen wrote to let me know that her son’s autism was a constant
source of worry for her. She is a mother that loves her son. At the
same time, she worries that her son’s siblings carry a genetic tendency
and that their own hopes for marriage and children are tainted with
concerns about how these genetic tendencies will manifest themselves in
the lives of their own children. She worries that her other son one day
will have to bear the strain of raising a child who is affected by
autism. Ellen writes, “As much as we love our son, we would give
anything to have him be `typical’. He will always require supervision
and assistance. He is the great passion of my life and also a very
My State of Illinois has seen a dramatic increase in the number of
autism cases in the past 10 years. The number of children in Illinois
receiving special education with autism as a primary diagnosis has
grown from 1,960 to 9,455–more than a 450 percent increase. As more
and more families become aware of the disorder and the impact on their
lives, it is imperative that we all–federal, state, and local levels–
make the most of our ability to promote research, advocacy, and policy
for autism-related disorders.
The State of Illinois is very involved. Our communities are
strongly committed. In 2003, the Illinois General Assembly passed a law
to develop an innovative model of service delivery called the Autism
Program to help these children and their families. Through a
partnership with the CDC, this program offers evidence-based diagnoses,
treatments, trainings, resources and referrals. Last year, the program
provided more than 4,700 clinical contacts and trained more than 9,400
parents and providers. This year, there is hope to expand the
Late last year, the President signed into law the Combating Autism
Act. The new law says we have authority to provide dramatic increases
in federal funding for autism, specifically for medical research,
screening tools, therapy interventions and education about the
disorder. But the new law says something else, too.
Coupled with State based efforts like those in Illinois, the new
law reflects the dawning awareness in Congress and throughout this
country that far too many people are affected by autism spectrum
disorder. It is my hope that this new law proves to be a significant
step toward a better understanding of how to prevent autism, of
effective treatments for people living with autism, and maybe even, one
day, a cure.
The efforts conducted at the State and now at the Federal level
will bring much needed action to address the growing prevalence of this
disorder. More importantly, however, these efforts can bring hope to
the thousands of families impacted by autism. We may have a long way to
go but I look forward to today’s discussion and learning what the CDC
is doing and will do to help these families and keep such hope alive.
Senator Harkin. Thank you very much, Senator Durbin. Thanks
for your strong support.
Senator Harkin. As I said, I wanted to get back to
questions, I wanted to talk about interventions now, and how we
handle, how to handle those now.
Now, Ms. Colston, tell me again, how old was Camden when he
was first diagnosed?
Mrs. Colston. He was 2\1/2\ when he was diagnosed with
Senator Harkin. Two and a half, and you said that he’d made
progress through intensive therapy, Individualized Education
Plans, a sizable team of dedicated professionals. I mean, did
that start right at 2\1/2\ when he was diagnosed?
Mrs. Colston. My experience was slightly different, as I
mentioned. In addition to having autism, he’s got medical
ailments that he was born with, so when he was born, he was
small for his age, he had horrible acid reflux–you’ve read the
Discover article, so you’re going to see a lot of parallels
Senator Harkin. You read this too, then?
Mrs. Colston. In full disclosure, I not only read it, but I
helped place it with Dr. Herbert, so—-
Senator Harkin. Bob Wright says he individually kept the
magazine afloat for a month by buying up all the magazines.
Mrs. Colston. Thank you so much, Bob Wright.
Senator Harkin. Sending them out.
Mr. Wright. Largest single purchaser.
Mrs. Colston. It’s a great thing. So, he was undiagnosed,
but we had horrible acid reflux, we were hospitalized, we had
these allergies, and they thought he had something called
Noonan Syndrome, the diagnosis changed–all that being said, in
the NICU these problems presented, and so therefore, the
Georgetown University Hospital made me sign up for Early
Intervention. I didn’t even know what it was. So he, because he
had low muscle tone and these other medical problems, at 6
weeks of age, the team came to my house. I know for a fact that
he is where he is because they came to my house, and gave only
4 hours of therapy, but that, I mean, with them, he turned his
neck, he sat up, he–they were the ones that actually–the
therapists there are amazing, because they encouraged me to
really look at the autism before the doctor saw it.
Senator Harkin. Yeah, I guess what I’m wondering, and I–as
I said I had dinner Sunday night, no secret, I had dinner with
the former Lieutenant Governor of the State of Iowa, Sally
Peterson, who’s been very much involved in this issue. Their
son, Ron is now, I think 20, 21, doing very well.
Mrs. Colston. Oh, good.
Senator Harkin. But, again, they had early intervention,
they could afford it, they had all of the accoutrements,
everything that they needed. They asked the question–what
happens to families that don’t have the monetary resources that
we do? How did you happen to–I don’t mean to pry, but how is
this–this costs money—-
Mrs. Colston. Oh, oh yeah. I mean, my out-of-pocket
annually–and I have good insurance, keep in mind.
Senator Harkin. Yes.
Mrs. Colston. Is between $9,000 and $15,000 a year. That’s
not easy. At Autism Society of America, we have a 1-800-3AUTISM
number, and it’s a great resource, but we learned so much from
that. Because the calls we get are about desperation
Senator Harkin. Sure.
Mrs. Colston. People–so, I’m lucky to be able to swing
that, in good years and bad, but these people mortgage their
homes–especially when their children become adults–that’s
where the rubber hits the road, financially.
Senator Harkin. Now, this is where I’m going to focus on
Dr. Favell. I am so intrigued by what you’re doing. As many
families tell me, or people I’ve talked to with autistic
children, you know, when they go to the doctor’s office, or
when they see a behaviorist or a psychologist, maybe the child
is not exhibiting anything at that time.
Dr. Favell. Right.
Senator Harkin. When they need help is at home when things,
go all to heck, all right? There’s no one there. That’s why I’m
intrigued by what you’re doing.
How, tell me, enlighten me a little bit more about how, how
many families could a trained psychologist, behaviorist,
someone who is trained and knows how to deal with children with
autism, how many could they handle on some kind of a system
like this? I mean, on a 24-hour a day basis, I’m trying to
figure, could one handle three families? Or two, or five? I
just don’t know.
Dr. Favell. Mr. Chairman, it’s an excellent question, and
the answer is just evolving, but for example, we did as part of
our work with the Celeste Foundation, one demonstration that
calculated that, if a professional, like a behavior specialist,
was to provide in-home services, they might be able to visit
two families a day, given travel distances, given missed
appointments, given inclement weather, all of the vagaries of
the logistics of supplying services, perhaps they could see two
to three families a day. Of course, again, in more rural areas,
that number decreases.
On the other hand, if you have a behavior specialist, or a
behavior analyst, who is working with this interactive video
kind of capacity, you could see potentially 20 families a day.
Now, this kind of remote, this tele-health, does not replace
face-to-face intervention and support, but it can augment it,
and expand, exponentially, the number of families that can be
touched a day.
Senator Harkin. As I understand it, in the beginning you do
have face-to-face involvement with the families, is that
Dr. Favell. Yes, in the model that we tested in our
demonstration project, they spent–the families such as Josh
Cobbs’ family–spend a week on-site, developing priorities and
learning basic strategies of intervention and teaching. Then
they went home with their interactive video system, and then
that began the process of the interactive consultation, support
It started with about 10 to 14 hours a week of interactive
video support–it’s a couple of hours a day. We think,
actually, and the families tell us, it might be able to be
somewhat less, it all is individualized, depending on the needs
of the child. Then, it was after three weeks reduced to about 5
to 7 hours a week, and then 3 to 6 hours a week.
Senator Harkin. I see.
Dr. Favell. So, there’s yet to be worked out the formula
for exactly the parameters for what is needed, and it will
always be individualized, just as the IEP and the IHP requires,
but the intuitive reasoning behind having one professional who
now is able to touch lives through this remote medium is quite
Senator Harkin. What more do we need to do to test this
Dr. Favell. Well, I think we need to bring it, as we say,
to scale. We need to test fully the economics of it, we need to
test it across broader bands, including some other
disabilities, and may I say, also, this kind of innovation
should not be restricted to children alone. We can’t forget the
many, many thousands of people who are adolescents and adults
who are adolescents and adults who are also living with autism.
So, we have further to test there. But, I think probably the
single most important element in bringing this to scale, as I
say, is to develop the policies behind reimbursement
strategies. If I, as a psychologist and a behavior analyst, can
be reimbursed for providing services face-to-face in a home,
than I should presumably, also be allowed to be reimbursed for
providing comparable services, now, over remote interactive
video. Yet, easily half of the States do not allow for that
kind of reimbursement through Medicaid.
So, and then those States that do allow it, there’s wide
discrepancy in what they reimburse. Yes, sir.
Senator Harkin. Let me ask you, Mrs. Colston. If you had
had something like this available to you, would that have
Mrs. Colston. Yes, it would have helped me a lot. Not only
because, most parents of children with autism work full time,
and are probably hourly wage workers, and so getting off to run
home for the times you can do an early intervention is tough.
But also, because then the therapist could see, as Dr.
Favell says, the bad time of night.
Senator Harkin. Yes.
Mrs. Colston. Where, when the behaviors of autism, it just
gets harder to be a kid with autism.
Senator Harkin. I’m, I have a note here, I’m holding in my
hand that says Josh Cobbs is here, the father of Noah Cobbs who
is in that news clip, is that right?
Mr. Cobbs. Yeah.
Senator Harkin. Oh, well Josh, welcome to the committee, I
should have pulled up a chair for you and asked you a question.
Yeah, come up here, come up here, sit down.
I didn’t even know you were here. Now, the recorder is
going to want to know your name.
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.