Episode Transcript
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Speaker 1 (00:00):
It is Colorado's Morning News. Autism destroys families, and more importantly,
it destroys our greatest resource, which our children. Hell and
Human Services Director Robert F. Kennedy Junior. He has released
plans to collect data on autistic people, including private medical records.
Speaker 2 (00:15):
The plans an attempt to study autism and create a
registry tracking individuals on the spectrum autism and disability. Advocates
speaking out against the plan and claims the regarding the condition.
Joining us now on the KWA Common Spirit Health Hotline
to talk more about it is the executive director of
Autism Society of Colorado. It's Jennifer Corb. Jennifer, thank you
so much for your time this morning.
Speaker 3 (00:36):
Good morning. I'm delighted to be here. Thank you for
having me.
Speaker 2 (00:39):
Tell us a little bit more of why advocates set
the Autism Society of Colorado are concerned about this National
Institute of Health collection of private health records for Americans
on the spectrum sure well.
Speaker 3 (00:53):
Surveillance is a recognized tool in health research, meaning that
many health researchers collect data identifying people by their disability
and putting it in a national type registry. Offers so
many HIPO violations. There's a lot of legal violations, but
more importantly than that, people are now really afraid to
(01:13):
disclose their diagnosis, which inhibits them from getting the care
they need, which inhibits them from wanting their children tested
or identified, which then further isolates people from getting the
most appropriate care to help them once they have an
autism diagnosis. So, I think there's multiple layers of why
we're concerned about something like this, and that's just a
(01:36):
few on the surface.
Speaker 1 (01:37):
What does Secretary Kennedy get wrong about autism?
Speaker 3 (01:40):
Jennifer So, I think there's a couple of really important
things right at the very top. First of all, we
are one hundred percent clear that autism is not caused
by vaccines, and creating that fear for families really makes
it difficult for families to choose appropriate healthcare. Autism society,
we're not advocating for or against vaccination, not the family's decision,
(02:04):
but we want people to have informed information, and there
is multiple sound science that that is not a causation
of autism, and we want people to be really knowledgeable
about that so they can make good decisions for their family.
I think secondly, using the word epidemic around autism is
also very uninformed. Epidemic is a word that's used for
(02:25):
disease or disease transmission, and autism is not a disease.
Autism is a developmental disability that occurs in the brain
and is present from birth, So it is not an epidemic.
There is an increased prevalence because we know more and
we can we can test more readily. That is what's happening.
Speaker 4 (02:45):
Jennifer going off to that, lastly, I'm sorry, go ahead.
Speaker 3 (02:49):
No, Lastly, I think I'm making a widespread statement about autism.
People with children with autism, families are destroyed, Their people
are a burden, causes so much shame for a family
that had no choice in this diagnosis. Is it very difficult, Yes?
Are there families that are really struggling, Yes, But to
(03:11):
couch the entire spectrum in those words, is very harmful.
Speaker 4 (03:16):
Jennifer going off of that a little bit.
Speaker 2 (03:18):
RFK Junior also said that he wants to find the
cause of autism by September.
Speaker 4 (03:23):
Is that realistic?
Speaker 3 (03:25):
Absolutely not so. We've been studying the cause of autism
for many years and we're getting closer and closer and closer.
But we are not there yet, So to think that
we're going to get there by September creates a false
sense of hope. I think everybody wants to know, like
what's causing this, especially those of us with children with autism.
We want to know, But realistically getting there by September
(03:46):
when we've been studying this for many years, creates that
false hope that we're not going to You know, that
people are going to latch onto something that may not
be true.
Speaker 1 (03:56):
Jennifer, what do people say, like me, I don't have
a child there it's autistic. I have friends or family
members extended families that it may do. But what do
we get wrong about autism and about the kids in
your experience of raising one?
Speaker 3 (04:11):
Sure, I think what people get wrong about autism is
that it looks a certain way, or people with autism
act or behave a certain way. I think the media
has done a better job lately of representation, but I
think for people to know that it's a spectrum and
it looks and sounds and feels so different for every family.
(04:33):
So when someone tells you they're autistic or they have
an autistic person in their family, expecting a certain set
of behaviors isn't the way it is. I think being
open and asking your people how's that going for you?
Or tell me how I can come alongside your family
is the very best way to sort of meet that
when you have someone in your life that's autistic, or
(04:54):
a family member or a cousin, a nephew, something like that.
Speaker 2 (04:58):
Jennifer, what is the one thing you feel like you
would like to see from the Health of Human Services
Department when it comes to autism.
Speaker 3 (05:06):
I think we are all we are all in favor
of some strong, scientifically sound, ethically based research. Any research
initiative must include autistic individuals, and people need to understand
that there will be robust safeguards. We want them to
do their research. We want them to figure this out
so that we can help people, but we want them
(05:27):
to do it in an ethical, safe, trust, wait, trust
filled way so that people know when the research comes
out that we can understand and know and trust what
has been discovered.
Speaker 1 (05:38):
And Jennifer, that follow up to that, then I would
imagine you'd be concerned about who Kennedy is put in
charges this research, because he's somewhat of a well skeptic
in somebody who's had some of his research debunked.
Speaker 3 (05:50):
He is, You're right, and I'm hopeful that with enough
pressure from a lot of our advocacy agencies that we
are sort of getting around and helping each other to
sort of get a lot of scientifically sound people with
really deep ethical roots to sort of help those studies.
(06:12):
And you're right, the person they have chosen, we're already
feeling like, well, this isn't probably the research that we're
going to be able to trust, which we don't want.
We wanted to be really sound. So maybe balancing that
perspective with research that's already founded in science would be
a great starting place.
Speaker 2 (06:30):
Executive director of the Autism and Society of Colorado, it's
Jennifer Corp.
Speaker 4 (06:34):
Jennifer, thank you so much for your time this morning.
Speaker 3 (06:37):
Thank you so much for the opportunity. I hope you
all have a great day.
It is Colorado's Morning News. Autism destroys families, and more importantly,
it destroys our greatest resource, which our children. Hell and
Human Services Director Robert F. Kennedy Junior. He has released
plans to collect data on autistic people, including private medical records.
Speaker 2 (00:15):
The plans an attempt to study autism and create a
registry tracking individuals on the spectrum autism and disability. Advocates
speaking out against the plan and claims the regarding the condition.
Joining us now on the KWA Common Spirit Health Hotline
to talk more about it is the executive director of
Autism Society of Colorado. It's Jennifer Corb. Jennifer, thank you
so much for your time this morning.
Speaker 3 (00:36):
Good morning. I'm delighted to be here. Thank you for
having me.
Speaker 2 (00:39):
Tell us a little bit more of why advocates set
the Autism Society of Colorado are concerned about this National
Institute of Health collection of private health records for Americans
on the spectrum sure well.
Speaker 3 (00:53):
Surveillance is a recognized tool in health research, meaning that
many health researchers collect data identifying people by their disability
and putting it in a national type registry. Offers so
many HIPO violations. There's a lot of legal violations, but
more importantly than that, people are now really afraid to
(01:13):
disclose their diagnosis, which inhibits them from getting the care
they need, which inhibits them from wanting their children tested
or identified, which then further isolates people from getting the
most appropriate care to help them once they have an
autism diagnosis. So, I think there's multiple layers of why
we're concerned about something like this, and that's just a
(01:36):
few on the surface.
Speaker 1 (01:37):
What does Secretary Kennedy get wrong about autism?
Speaker 3 (01:40):
Jennifer So, I think there's a couple of really important
things right at the very top. First of all, we
are one hundred percent clear that autism is not caused
by vaccines, and creating that fear for families really makes
it difficult for families to choose appropriate healthcare. Autism society,
we're not advocating for or against vaccination, not the family's decision,
(02:04):
but we want people to have informed information, and there
is multiple sound science that that is not a causation
of autism, and we want people to be really knowledgeable
about that so they can make good decisions for their family.
I think secondly, using the word epidemic around autism is
also very uninformed. Epidemic is a word that's used for
(02:25):
disease or disease transmission, and autism is not a disease.
Autism is a developmental disability that occurs in the brain
and is present from birth, So it is not an epidemic.
There is an increased prevalence because we know more and
we can we can test more readily. That is what's happening.
Speaker 4 (02:45):
Jennifer going off to that, lastly, I'm sorry, go ahead.
Speaker 3 (02:49):
No, Lastly, I think I'm making a widespread statement about autism.
People with children with autism, families are destroyed, Their people
are a burden, causes so much shame for a family
that had no choice in this diagnosis. Is it very difficult, Yes?
Are there families that are really struggling, Yes, But to
(03:11):
couch the entire spectrum in those words, is very harmful.
Speaker 4 (03:16):
Jennifer going off of that a little bit.
Speaker 2 (03:18):
RFK Junior also said that he wants to find the
cause of autism by September.
Speaker 4 (03:23):
Is that realistic?
Speaker 3 (03:25):
Absolutely not so. We've been studying the cause of autism
for many years and we're getting closer and closer and closer.
But we are not there yet, So to think that
we're going to get there by September creates a false
sense of hope. I think everybody wants to know, like
what's causing this, especially those of us with children with autism.
We want to know, But realistically getting there by September
(03:46):
when we've been studying this for many years, creates that
false hope that we're not going to You know, that
people are going to latch onto something that may not
be true.
Speaker 1 (03:56):
Jennifer, what do people say, like me, I don't have
a child there it's autistic. I have friends or family
members extended families that it may do. But what do
we get wrong about autism and about the kids in
your experience of raising one?
Speaker 3 (04:11):
Sure, I think what people get wrong about autism is
that it looks a certain way, or people with autism
act or behave a certain way. I think the media
has done a better job lately of representation, but I
think for people to know that it's a spectrum and
it looks and sounds and feels so different for every family.
(04:33):
So when someone tells you they're autistic or they have
an autistic person in their family, expecting a certain set
of behaviors isn't the way it is. I think being
open and asking your people how's that going for you?
Or tell me how I can come alongside your family
is the very best way to sort of meet that
when you have someone in your life that's autistic, or
(04:54):
a family member or a cousin, a nephew, something like that.
Speaker 2 (04:58):
Jennifer, what is the one thing you feel like you
would like to see from the Health of Human Services
Department when it comes to autism.
Speaker 3 (05:06):
I think we are all we are all in favor
of some strong, scientifically sound, ethically based research. Any research
initiative must include autistic individuals, and people need to understand
that there will be robust safeguards. We want them to
do their research. We want them to figure this out
so that we can help people, but we want them
(05:27):
to do it in an ethical, safe, trust, wait, trust
filled way so that people know when the research comes
out that we can understand and know and trust what
has been discovered.
Speaker 1 (05:38):
And Jennifer, that follow up to that, then I would
imagine you'd be concerned about who Kennedy is put in
charges this research, because he's somewhat of a well skeptic
in somebody who's had some of his research debunked.
Speaker 3 (05:50):
He is, You're right, and I'm hopeful that with enough
pressure from a lot of our advocacy agencies that we
are sort of getting around and helping each other to
sort of get a lot of scientifically sound people with
really deep ethical roots to sort of help those studies.
(06:12):
And you're right, the person they have chosen, we're already
feeling like, well, this isn't probably the research that we're
going to be able to trust, which we don't want.
We wanted to be really sound. So maybe balancing that
perspective with research that's already founded in science would be
a great starting place.
Speaker 2 (06:30):
Executive director of the Autism and Society of Colorado, it's
Jennifer Corp.
Speaker 4 (06:34):
Jennifer, thank you so much for your time this morning.
Speaker 3 (06:37):
Thank you so much for the opportunity. I hope you
all have a great day.
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