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STATEMENT OF MARGUERITE COLSTON, DIRECTOR OF COMMUNICATIONS, AUTISM SOCIETY OF AMERICA, BETHESDA, MARYLAND

Mrs. Colston. Thank you. I’d like to thank Chairman Harkin,
and Senator Specter and the members of the subcommittee for
giving me the opportunity today to share my experience of
living with a child on the autism spectrum. I also wanted to
say thank you very much to you and Senator Specter for those
very important questions you asked.

It is truly an honor to be asked to speak to you today, and
I hope I can convey some of the needs, hopes and dreams of the
more than 1 million families in America who are affected today.

As you mentioned, I am the Director of Communications for
the Autism Society of America, and I am the mother of two
children, including a 6\1/2\ years old son with autism. My son,
pictured here, is Camden, this is Camden.

My son has a disorder with no known cause, and no known
cure. You have, at your disposal today, the best experts on
researching causes and cures. But I am here today to tell you
about the very important space between causation and cure, the
space that Camden and I occupy, that is, how we live with
autism.

Because that important space is occupied today by 500,000
children, and at least as many adults, families desperately
need Federal leadership and funding for autism today.

Camden is on the severely affected end of the spectrum. He
cannot talk, has some cognitive delays, major attention
deficits, and suffers significant social and behavioral
challenges. As you can see, though, he’s also adorable, and he
has a much larger capacity to learn than any of us imagined.

Like many parents, I was told that autism was not
treatable, and that the best thing I could do for Camden was to
prepare myself and my family for the idea that he would never
be independent. Experts told me that information when he was
only 2\1/2\ years old.

Today, my little boy, who for years did not turn to his
name or react to games, now grabs my hand after dinner, and
takes me to the refrigerator for his nightly ice cream. When
the school bus comes every morning, he walks on with a grin and
he finds his seat. Camden does not make these developments
naturally, but through intensive therapy, Individualized
Education Plans, high medical costs, and a sizable team of
dedicated professionals.

In many respects, my story is typical. Camden was diagnosed
with autism when he was 2\1/2\. However, I was lucky that
Camden was born with other medical ailments, and very low
muscle tone, because unlike most children with autism, Camden
began receiving Early Intervention services from our county
when he was just 6 weeks old. Even though we only received 4
hours per week of Early Intervention, that program was the
reason Camden can chew, sit up, and walk onto a school bus
today.

Like most families, I had to wait 12 long months to get an
appointment with a developmental pediatrician, when my
pediatrician expressed concerns about Camden. My wait times for
his specialists continue to be 12 to 18 months, so we rely
heavily on the public educational services we receive, thanks
to the IDEA Act, and thank you for your support of that.

As I think about it, however, I am still very concerned
about what would happen to Camden, once the school bus stops
coming. Camden, and most children and adults with autism, is
going to need a lifetime of supports and services. Even if he
is able to speak someday, he will need training to prepare him
to enter the workforce, assistance with transportation and
housing, access to health care, and a range of other services
to allow him to live as independently as he is able.

Unlike most parents, I consider myself to be a very
privileged American. I received a great education, I have a
good job, I own my own house, and I have a wonderful and
supportive family, and several of them are here today. I can
afford a small amount of respite care and private therapy. So,
I have to wonder, if I couldn’t get my son diagnosed before
2\1/2\, and if it takes me 18 months to see a doctor, and if I
can’t afford truly comprehensive services, than what is
happening to the average American with a child on the autism
spectrum today?

If I accepted that autism was not treatable, and Camden had
no hope, what do others do? What happens after Camden turns 22,
and the federally-mandated disability services end? What are we
going to do about this?

One of the things we can do for Americans living with
autism is fund the Combating Autism Act, and encourage the
resulting research to be treatment-guided, not just causation
specific. Funding the CAA also means funding the Inter-Agency
Autism Coordinating Committee, and they have a wonderful
roadmap for services. We can also pass and then fund the Autism
Services bill put forth by Senators Clinton and Allard last
month, and which the House introduced today.

As a parent, I strongly support those bills. As a staff
member for the Autism Society, I can assure you that we, our
chapters and our members will work tirelessly to advance
legislation that includes research services and supports for
individuals with autism.

I love my son, Camden, with every bone in my body. I know
there are a million Camden’s out there whose needs are not
being met, and whose families are in crisis. Regardless of the
cost, we need to support coordinated Federal autism solutions
today. Only then will we be able to optimize the potential of
each child with autism, and provide them opportunities for
success in their communities.

PREPARED STATEMENT

Being here today and being heard by the U.S. Senate gives
me an enormous sense of hope that I never dared to have. With
your help and your leadership, I may start to hope for Camden,
the same hopes I have found I have for my neuro-typical
daughter, Theresa–that he will be provided the opportunity to
be a happy, productive member of his community.

I’d like to thank the committee again, for hearing me, and
for support of this legislation.

[The statement follows:]

Prepared Statement of Marguerite Kirst Colston

I would like to thank Senator Harkin and the members of this
subcommittee for giving me the opportunity today to share my experience
of living with a child with autism. It is truly an honor to be asked to
speak to you today, and I hope I can convey some of the needs, hopes
and dreams of the more than 1 million families in America today who are
affected by autism.

My name is Marguerite Kirst Colston. I am the Director of
Communications with the Autism Society of America and I am the mother
of two children, including a 6-year-old son with an autism spectrum
disorder. My son, pictured here, is named Camden.

As you have heard today from the panelists, my son has a disorder
with no known cause and, as I have been told by many doctors, no cure.
You have at your disposal the best experts on researching causes and
cures, but I am here today to tell you about the very important space
between causation and cure–the space Camden and I occupy–that is: how
we live with autism. Because that important space is occupied today by
500,000 children, and at least as many adults, families desperately
need federal leadership and funding for autism.

Camden is on the more severely affected end of the autism spectrum,
by which I mean he cannot talk, has some cognitive delays, major
attention deficits and suffers significant social and behavioral
challenges. As you can see, he is also adorable and, as I am finding,
has a much larger capacity to learn than any of us imagined.

Like many parents, I was told that autism was not treatable, and
that the best thing I could do for Camden was to prepare myself and my
family for the idea that he would never be independent. Experts told me
that when Camden was 2\1/2\. Today, my little boy, who for years did
not turn to his name or react to games, now grabs my hand after dinner
and takes me to the refrigerator for his nightly ice cream. When the
sun sets, he runs to take a bath. When the school bus comes every
morning, he walks on with a grin and finds his seat. Camden does not
make these developments naturally, but through intensive therapy,
individualized education plans, high medical costs, and a sizeable team
of dedicated professionals helping us along.

In many respects, my story is typical. Camden was diagnosed with an
autism spectrum disorder when he was 2\1/2\. This diagnosis came after
2\1/2\ years of emerging symptoms, disappearing interaction, specialist
referrals, hundreds of doctor’s visits, several hospitalizations–and
many missed clues. I was “lucky” that Camden was born with other
medical ailments and very low muscle tone, because unlike most children
with autism, Camden began receiving Early Intervention services from
our county when he was just 6 weeks old. Even though we only received 4
hours per week of Early Intervention, that program was the reason
Camden can chew, sit up, and walk onto his school bus today.

Like many parents with children with autism, I had to wait 12 long
months to get an appointment with a developmental pediatrician when my
pediatrician expressed concerns about Camden. My wait times for his
specialists continue to be 12 to 18 months in duration, so we rely
heavily on the educational services with receive in our public school
system thanks to IDEA Act. I want to say a heartfelt thank you to you,
Senator Harkin, for your strong support of legislation like this.

As I think about it, however, I am still very concerned about what
will happen to Camden once the school bus stops coming. Camden–and
most children and adults with autism–is going to need a lifetime of
services and supports. Even if he is able to speak one day, he will
need training to prepare him to enter the workforce, supports in his
job, assistance with transportation and housing, access to health care,
and a range of other services to allow him to live as independently as
he is able.

Unlike most parents, I consider myself a very privileged American.
Like the rest of the panelists here today, I received a great
education, have a good job, own my own house, and have a wonderful and
supportive network of family. I can afford a small amount of respite
care and private therapy. I stand up for my rights and have the
confidence to ask questions of the medical and educational communities.
But I have to wonder: if I couldn’t get my son diagnosed before 2\1/2\,
and if it takes me 18 months to get into a doctor, and I can’t afford
truly comprehensive services, then what is happening to the average
American with a child with autism today? If I accepted, in a desperate
moment, that autism was not treatable and Camden had no hope, what do
others do in their sorrow? What happens after he transitions away from
the education system? And, what are we going to do about this?

One of the things we can do for Americans living with autism is
fund the CAA and encourage the research done here to be treatment-
guided, not just causation-specific. Funding the CAA also means funding
the Inter-Agency Autism Committee, which could serve parents
tremendously by coordinating Federal autism services and research along
a road map that will help us now. This is why the Autism Society of
America encouraged tens of thousands of members to support CAA and why
we also support legislation like the reauthorization of the IDEA act,
the Lifespan Respite Act, and S-CHIP funding.

Last month, Senators Clinton and Allard took a historic step toward
empowering families and individuals with autism by introducing
legislation to build and support a services infrastructure for autism
spectrum disorders. Unfortunately, our current system for assisting
adults with disabilities is stretched way too thin. Providers do not
have the capacity to meet the ever increasing number of individuals
with autism. We must do more to identify best practices for serving
people with autism spectrum disorders. The House companion bill will be
introduced today.

As a parent I strongly support this legislation. As a staff member
for the Autism Society of America, I can assure you that we will work
tirelessly to advance this bill, and other measures that improve
services and supports for individuals with autism. I love my son Camden
with every bone in my body, and I know there are a million Camdens out
there whose needs are not being met and whose families are in crisis.
Regardless of the cost, we need to support coordinated federal autism
solutions today. We will then be able to optimize the potential of each
child with autism and provide them opportunities to for success in
their communities.

Being here today and being heard by the U.S. Senate, gives me an
enormous sense of hope that I never dared to have. With your help and
your leadership, I may start to hope for Camden the same hopes that I
have for my “neurotypical” daughter Theresa–that he will be a happy,
productive member of his community in his way, some day. Thank you.


Senator Harkin. Thank you very much. That is very poignant
and heartfelt testimony.

Next, we turn to Dr. Judith Favell, CEO of AdvoServ, a
multi-State network of treatment programs for children and
adults with developmental challenges. Dr. Favell received her
Bachelor’s Degree in Psychology from Western University, and
her Ph.D. from the University of Kansas, out my way. Dr.
Favell, welcome to the committee, please proceed.

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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.

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[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

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Fact: Vaccines Do Not Cause Autism.

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