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
STATEMENT OF JOSH COBBS
Mr. Cobbs. It’s Josh, last name is Cobbs, C-O-B-B-S. I am
not prepared, but I’ll do my best.
Senator Harkin. I wasn’t prepared to have you here, either.
But, I just want to know–now. We saw that little clip,
obviously, you know, TV wants to get in the gane, with all due
respect to Mr. Wright, television tries to get it in a very
short clip, tell me what this has meant for you and your wife
and your son, on this, again, the availability of it, that you
can do this during the day, right? On weekends, too, I don’t
know, can you, weekends?
Mr. Cobbs. Sure, we actually had services, initially, 7
days a week, two calls, one in the morning, one in the evening,
and we structured them around when we were struggling, such as
sitting at the dinner table, or breakfast table, which was very
The doctors got to see Noah in his true element, so he
wasn’t acting up because there was a worker in the class, or in
his, in our home, and he wasn’t putting on, on-stage, if you
will, so he was in his natural surroundings, which was very
helpful for us, because that’s where the behavior was
happening. So, that was very important.
One thing I’d like to clarify, it’s not just important for
our immediate family, but also our, his grandparents, and aunts
and uncles who are affected by autism as well, they were able
to come in and help and once Tina and I were trained adequately
through the Celeste Foundation and our immediate family, we
then had the tools to go out and help others, so—-
Senator Harkin. Now, I’m told, I’ll just throw this
question out. I’m told that many times, what might be the
normal reaction of a parent to a behavioral problem of a child,
that if that child is autistic, it may in fact, exacerbate the
problem, and make it worse, and so you have to have other
Mr. Cobbs. Absolutely.
Senator Harkin. I’m not a behavioral scientist, or anything
like that, I’ve just been told that. So the answer is yes.
Mrs. Colston. We like to say that children with autism
don’t have osmosis, as many of us do. So, a lot of speech
therapies and other therapies are talk, and so when you talk at
a child, or even soothe them with your voice, you’re changing
the environment, and that may make them, there’s a term called
sensory violation–it may sort of freak them out a little bit.
For example, I was trying to comfort Camden, and I would
stroke him–well that, that just makes him feel completely out
of his element. So, there are things that a mother does
naturally, that sometimes we have to alter, because children
with autism like deep pressure, and that grounds them. Or
Senator Harkin. So, something like a tele-health thing
could be instructive in that, where you could actually talk to
someone and say, don’t do this, or do this?
Mrs. Colston. Right.
Mr. Cobbs. Absolutely.
Senator Harkin. Has that happened to you?
Mr. Cobbs. Excuse me, absolutely. I do want to point out,
the actual day that the TV station was there was Noah’s worst
day. Everything that could wrong, went wrong. He went outside,
he was crying, he was kicking, it was–I was thinking to
myself, “We are failing right now, as parents,” with TV
reporters there, and a few other people, and through the
project from Celeste, they actually, right there, coached us
through the moment, and it, it took about 40 minutes, to get
Noah reeled back in, to get him back into the house, and to get
him calmed down, but, wow, what a great feeling. That was a
true test for us, is we can make that happen with the right
help and coaching.
Senator Harkin. Bob Wright, your grandson, how old is he
Mr. Wright. He’ll be 6 in August.
Senator Harkin. Six. He was diagnosed early on?
Mr. Wright. He was diagnosed at 2 years and 3 months.
Senator Harkin. Now, his parents think about what we were
just talking about, this is a new thing, here, about having
that kind of tele-health, where someone could come into your
home, so to speak, at any time of the day or night, would that
have been of help to them?
Mr. Wright. It’s hard to say, I can’t imagine it wouldn’t
have been helpful. My grandson has auto-immune problems, and he
had gastro-intestinal issues which were not diagnosed at the
time. So, they weren’t diagnosed until 2 years later, almost 2
years. Which meant that he was suffering during that period of
time, and we–nobody understood why. So, it was a very
difficult situation with him. I think you made the comment,
you’re–in some respects a parent is better off, in some
respects, if the autistic child has treatable, or at least has
traditional medical problems. Because then you get access to
doctors and hospitals and insurance. At least for some of it.
If you have no medical problems whatsoever, you don’t get
access to hospitals, doctors or insurance, really.
Senator Harkin. Yes.
Mr. Wright. So, if you, if you’re awfully serious, on the
other hand, and it’s not diagnosed, you really are in a pickle.
That’s what my daughter found.
However, having said all of that, the kind of–anything
that would allow a third party to be of help at the time, at
the worst time of the day is going to be of benefit to an
autistic family. There’s no question about it–whether it’s on
the phone or whether it’s in person, or–that is so important.
Because the mothers just–I mean, you know, I worry as much
about my daughter as I worry about my grandson. I worry about
my daughter being on the edge all of the time.
Senator Harkin. Yes.
Mr. Wright. Because he has these serious problems, and he
can’t just–he can go from looking and acting very normal to
get 104 degree temperature in like, it seems like, 3 hours
later. You have to rush him right to the hospital. Of course,
they look at him like, you know, “How could this happen?”
They don’t have a clue what he’s, what’s happening.
Turns out he has severe colitis, bordering on Crohn’s
disease, that’s an adult, that’s an adult condition, not a
children’s condition. You also find, though, in the case of a
lot of these children, when they have medical problems, the
medical protocols don’t exist for children for some of these
conditions. The medical protocols generally require the
cooperation of the patient for diagnosis of certain kinds of
things, like gastro. Where you can’t talk to a child who can’t
talk. A child who won’t express and react to–you point to your
stomach, you don’t point to his, he looks at you like, you
know, you’re from another land. So you, they don’t, they can’t
be diagnosed in many cases, either, which makes it
So, I would say that–I wrote down the Celeste Foundation,
I thought that was an excellent concept, I’m not aware of it,
and I think anything–I think one of the issues is how do
organizations like that get funding? Do they, they have a
foundation that gets them started, how do they get enough
funding, so that they can begin to develop data, you know, that
won’t be sharply criticized by the first skeptical person that
Senator Harkin. Yes.
Mr. Wright. So that it can get, you know, it can get enough
attention, it is very difficult to get insurance, it’s very
difficult to get State or Federal funds to support this,
because the burden, the burden of proof is so substantial. So,
that’s a real challenge–how do you take this experiment and
build it up and, you know, at some point, you run out of money
to do that, and I think that’s part of what Autism Speaks–
we’re trying to figure out how we can help groups like that
when they get to a point, to get to the next stage.
Senator Harkin. Because that’s again, what I’m looking at,
you said it was costing you $9,000 to $15,000 year, out of
Mrs. Colston. Yes, that’s above and beyond–I mean,
Camden’s non-verbal, so of course, I’ve had 6.5 years of speech
therapy–and it’s always declined. So, that adds up, and
medical issues and that. So, that’s above and beyond co-pays.
Senator Harkin. So, we do know. I’m going to make a
statement, I don’t know if it’s scientifically sound or not,
but everyone I’ve ever talked to says that it is factual that,
the earlier you get to a kid with autism, and you provide
interventions and analysis, intervention, support, training,
the proper kind of activities–that it can lead, later on, to
them being more self-sufficient, more independent.
My friend Sally Peterson, and Jim Autry whose son Ron is
now 21, lives by himself, has a job, takes the bus back and
forth to work. They say, if it hadn’t been for those early
interventions it never would have happened. Because they know
other people that didn’t have that. Their kids, after 4 or 5 or
6, they just level out, and that’s the end of it.
Mr. Wright. Mr. Chairman, my grandson’s costs are well over
$100,000 a year, out of pocket.
Senator Harkin. Wow.
Mr. Wright. Now, I can afford to help on that.
Senator Harkin. Yes.
Mr. Wright. But how many people could do that? That’s why
Senator Harkin. Well, this is what I’m trying to see, I’m
trying to think of two things, here. How do we do more and
better research, and I’ve got a couple of more questions I’ve
got to ask you, too, and I know Dr. Gerberding has to leave.
But then, how do we also do the most cost-effective, best
methodologies to get the families that have kids now, so that
we have that early intervention? I’m thinking that so many
people out there can’t get it, they may be isolated, they don’t
have the financial resources that some of us do, and if they
don’t have an attendant illness, they may not have anything.
So, if we can use something like a tele-health, a thing
like that, where one trained person can interact with a number
of families, and where families can get help when things go all
to heck in the family, it seems to me that that just begs, begs
for more expansion, to see how it would work, and to see if we
can adapt this, adopt it, adapt it, adapt it to the, to a
larger segment of our population. It seems to cry out for that
kind of support.
Mrs. Colston. It seems to me, as a parent, that there’s a
natural fit. If you could take this technology, or your
funding, and put it towards early intervention, which I think
is IDEA Part C?
Senator Harkin. Yes.
Mrs. Colston. You know, there are so many great models in
place in this country, that are cost-effective, and that’s one
of them. And I wonder if you could marry those two through Part
C, and see how it worked, or pilot it. Because I know that the
early intervention therapists who helped me, they had a
tremendously huge caseload. I think they got caught up in
overall education funding as well.
Senator Harkin. Yes.
Mrs. Colston. So.
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.