Cronkite school of journalism at
Arizona state university.
Amna: CDC data released today
finds an uptick in the
prevalence of autism spectrum
disorder in the U.S.
The most recent data, from 2020,
reveals 1 out of every 36
children in America was
diagnosed with autism.
In 2018 that figure was one in
44, in 2010, it was 1 in 68.
The findings also show how
pandemic disruptions kept many
younger children from earlier
autism diagnoses.
For more on this I am joined by
Dena Gassner, adjunct professor
at Towson university and a
member of the interagency autism
coordinating committee, which
advises the government on
funding for autism research.
She herself was diagnosed with
autism at age 40.
Welcome and thank you for
joining us.
A lot of folks will look at that
increasing to be very concerned.
You said that you see those
numbers as good news.
Why is that?
>> My colleague and I wrote a
commentary that specifies that
the crisis we are experiencing
is not an increase in autism,
because this is really
reflective of enhanced diagnosis
, and as you have seen
specifically identifying lack of
brown children, Asian children
as well as being able to
identify a few more people
assigned female at birth.
Unfortunately, the girls are not
keeping pace in terms of being
diagnosed in a timely manner as
much as their male cohort.
Amna: The rate rose faster for
children of color.
The estimates are just 3% of
black, hispanic, or
asian-pacific islander has an
autism diagnostic it's --
diagnosis compared to 2% of
white children.
>> Historically a lot of
children of color and have been
assigned inappropriate diagnoses
, or their autism expression has
been misperceived as behavioral,
and they have been really shot
into not special education but
more rigid behavioral programs
often with really tragic
consequences.
This is a relief.
It represents the idea that some
of these children who are lost
in these systems may actually be
finding their way home.
Amna: This tells us many more
children will need support
services of some kind.
Tell us more about access to
services.
We have all heard stories about
parents waiting weeks or months
just to get an appointment for
an assessment.
Is that unusual?
>> It is the rule rather than
the exception.
To be frank about it, it is the
rule for people of a certain
privilege.
If you had the privilege of a
solid education, the privilege
of being able to use English as
a first language, at the
privilege of financial
capacities to hire people to do
things to expedite the process,
your child is probably going to
be loud enough because of your
advocacy to get what they need.
The people that we try to
address in our commentary are
the people who do not come with
those relative privileges who
may be a black grandmother in
Atlanta at raising her second
child with autism, right? For
people like that, for people who
are single parenting or trying
to juggle employment or housing
as well as parenting and
navigating these systems, the
outcomes are much more
challenging and much more
difficult to get through area --
through.
Amna: What role does insurance
lay?
How often are these kinds of
services covered by insurance?
>> We have things that can be
covered provided you have
insurance.
That requires someone in the
household to be employed.
For many people on medicare or
medicaid, finding providers that
will take that income from the
assessment process is very, very
challenging.
Finding people who have
expertise in different cultural
and ethnic groups, winding
people who have the expertise to
diagnose for women and girls is
really difficult.
Then we still have an entire
generation of people that were
never diagnosed because such
diagnoses were not listed in
dsm.
There was not any category by
persons like myself it into, and
so we have to look at this that
although the numbers of better
for children, the numbers for
adults are still very dark and
very delayed far beyond a year
or two years, and it is often
wrapped in diagnostic trauma
because people cannot find
effective and qualified
providers.
Amna: CDC officials pointed out
the impact of the pandemic,
pointing out that up until March
2028 there was very good
progress in early
identification, early detection
of autism in younger children.
After March 2020 they saw a
dramatic drop off.
They are worried about
long-lasting effects.
Tell us about that.
What are those effects they are
worried about?
Why is early detection
important?
>> Early detection can be
helpful because we are getting
ahead of the game.
I would also say that this
population is a very resilient
population, and I would be
worried about kids who are put
through the gauntlet faster to
try to catch them up.
I think if we follow their
development to lead and
progressed them through growth
and personal achievement at
their own pace, that we will get
better outcomes.
We have really got to shift our
focus away from finding some
underlying cure to focusing on
why these systems are not giving
us better outcomes.
Amna: The fuller picture being
painted is there are more
children in particular who will
need help and there is not
enough help there to offer them
right now for families who
receive a diagnosis, knowing
what you know about the
emotional and financial toll
this can take, what is your best
guidance to them?
>> Persist, be the noisy person
that just does not stop until
you get what you need.
And I realize when I say that
that is a perfect position to be
able to take.
I would also say that we really
need to examine administrative
burden that make accessing these
services so difficult, and I am
going to discuss adults or
parents who may have
co-occurring disabilities of
their own.
We have these systems like
social security to social
service agencies often in our
darkest moments.
We do not go when everything is
successful.
We go when we bankrupted
everything that we had.
The systems are not able to be
utilized efficiently,
effectively and in a timely
manner.
Amna: That is Dena Gassner.
Thank you for your time.
>> Thank you for having me.