hi there today we are talking all about severe autism in adults and children who
will eventually become adults it is an excerpt from a podcast i did
with jill escher who is the president of the national council for severe autism
and we talk about the changes that happened
way back when we went from the dsm-4 to the dsm-5
all about the challenges with helping adults with severe autism
and some steps that we can all take to improve the situation not only for
our adult kids but also for
the kids coming up to adulthood
welcome back i'm dr mary barbera autism mom behavior analyst and best-selling
author each week i bring you some of my ideas about turning things around for
kids and adults with autism as well as for toddlers just showing signs so if
you haven't subscribed to my youtube channel you can join over 100,000
subscribers who have already joined so hit subscribe and hit the notification
bell as well so today we're just bringing you a short
excerpt from podcast number 153 from jill escher talking about severe
autism and his challenges
When Lucas was diagnosed, there was the DSM four version and that had autistic disorder,
being severe. It also had Asperger's and PDD-NOS, and Retts syndrome and,
uh, childhood disintegrative disorder. And when we went from DSM four, and
I think it was 2013 to DSM five, that's when they got rid of Asperger's, got rid of PDD-NOS,
which was mild in, in higher functioning levels, um, and collapsed everything into Autism
Spectrum Disorder level one, two, and three. Um, and I think I did a video blog on that we
can link to in the show notes, if you're, you know, new to this topic, because we're kind of,
we're touching on a lot of stuff here, you know, first the genetics and now the increase and now
the, all these diagnostic categories. But I think when it changed to DSM five, I mean,
and that at the same time, in 2013, you know, Twitter, Facebook, everything was going nuts
or starting, I'm not sure, you know, uh, exactly what year, all that took off, but
I think the people who are conversational and can self-advocate, you know, um, they, they started
advocating for themselves as they should. But then again, that's what the media portrays. That's
what the politicians want to go with. You know? Um, the whole neurodiversity movement is actually,
you know, saying that, our kids, you know, maybe don't need the care that, that they need, or,
or we shouldn't have places for them to go into pre vocational programs or otherwise known
as sheltered workshops, or we shouldn't have residential placements. Um, and it just, yeah,
I think, you know, honestly, I think there's been an all out assault on the severe autism community.
Um, and I say that reluctantly, because I don't want to say that I don't want to create
divisions, but it has been like an all out political assault on the severe autism community
by disability rights advocates that have a very rosy view of what autism is. Um, and there's a
real pervasive denialism about the level of disability and what their lifespan needs will be.
Um, and you know, one example you just mentioned was sheltered workshops. This is just, this is
not the only example, but the disability rights crusaders have very successfully, um, you know,
been limiting access to non-competitive employment for people with severe disabilities. Yeah. The
idea is that people with disabilities shouldn't be paid less than people without disabilities.
Okay. Well, all right. I'm all for somebody getting a competitive, integrated job,
if they can, I'm all for supports for that person. But the fact of the matter
is anybody with two eyes can see that that is not possible for probably the majority
of people with autism. I mean, the, the, the, the data really shows that people with autism have
incredibly low rates of employment. Even people with normal IQ range, even people, yes, exactly.
Like what the, the employment rate, at least the statistics that we're aware of are only like 10%
of, of people that have been diagnosed as Autism Spectrum Disorder, um, are actually competitively
employed and happy with that employment. Like, you know? Yeah. And, and a lot of those people
don't even work full time by the way. So yeah, it's really miniscule with
horrifically bad, um, employment rates. And so the, you know, the people who are sort of the,
uh, starry-eyed you know, ideologues are like, well, we just need to find more employment
opportunities for these people. We need more acceptance and understanding, and I'm like,
no, that's not actually going to get you very far with the vast majority of the population,
because the vast majority of population inherently lacks the ability to do this work.
Right. They lack the cognitive ability. They lack the functional ability. They have behaviors,
they need supports, you know, it's like, it's not possible. Right. Somebody who is like throwing a
tantrum and like kicking down the machinery at work is not going to be invited back. Right,
right. Right. So you know, or even, even like, Lucas, to even volunteer somewhere, he needs
a one-to-one support, highly trained support person with him. And then he can do very well.
Um, but if he actually got a part-time job, then this highly trained person could actually not
accompany him even short-term or long-term because that's a different funding source. And
then we'd have to bring in this type of worker or that type of worker. It’s like, forget it.
No, it's crazy. It's insane. It's an insane idea. But, but this insane idea has captured, right,
the imaginations of the policymakers and the disability rights leaders, um, who I think just
don't want to grapple with the reality, because the reality is really hard and very expensive.
And as the rate goes up, there's going to be a lot more adults like Lucas and Johnny,
um, coming down the pike. I mean, I've heard it be termed a tsunami is coming
for all. Oh there’s no question. All you have to take one look at the data, it's already a tsunami,
right. Already the adult services are completely overwhelmed by this population.
And now with COVID, oh yeah, it got even worse. Of course. Yeah. Yeah. So what can we do to,
to move forward in some small steps to make this better for kids coming down the pike and
that are gonna be adults, um, with severe autism. Like what can we do? Um, I think
everything has to start with truth. You know, we have to be as honest as possible, you know?
Just, um, kind of, you know, glossing over, uh, painting over reality, as we see all the time
you know, happening in the media happening in the, um, neurodiversity community, doesn't help
our population at all. All it does is further marginalize them and make them more invisible
and make their needs less urgent. Um, I, for 1 am entirely about honesty and truth and facts.
And we have to get those facts out there as clearly as we can. Um, you know, I think that the
data on the increase in autism is, has been really kind of swept under the rug. We need to have more
reports showing not just as you mentioned, like not just the diagnosis of autism, but what that
actually means in terms of functional levels. Um, we need to be able to project that and you
would think that by now, you know, 2021, that the, this work would have been done,
but in fact, very little work has been done on this. And the little work that has been
done is extremely alarming in terms of what it projects in terms of costs, not just to families
and taxpayers, you know, but to society at large, it's just an enormous cost burden.
So we need to be very realistic about it. And then we need realistic policy. I mean, I usually talk
about it this way. We have insurance, right? For a lot of things like I'm sitting in my
own home. I have home. If my house burns down, I have home insurance I'll be able to rebuild.
Right. Um, if I cross the street out there and get hit by a car, I have health insurance.
So if I get hit by a car, I can go to the hospital and they can, you know, do whatever to save me.
We don't have autism insurance. I mean, we have autism people think of autism insurance
in terms of access to ABA. And that that's fine. That's just one kind of small thing,
but we don't have a national system for thinking about how do we spread the risk, um, for,
you know, the lifelong care for adults with developmental disabilities, especially autism,
which is, I'm sorry, the most severe of all of the developmental disabilities.
Um, we don't think that way because we hadn't had this problem in the past, right. This is a
new problem. This is an unprecedented problem in an unprecedented population. And we aren't
really thinking realistically about how we're going to do that. Instead, we're sort of, um,
you know, we're utilizing old systems like Medicaid, which was never really developed
to address the needs of a population like this at this level, um, at these numbers, um,
and we're just sort of trying to use these old systems in a patchwork way.
It's a very fragmented, disconnected, illogical way to provide some services. Every state is
totally different. Every state is different. And I think like the IDEA did for education. IDEA was a
level playing field across all 50 states. This is the rule about how you
deal with kids in need of special, special education, right. Period, across 50 states.
Level playing field. We don't have that for adults. We don't have that legislation that says
this is the level playing field. This is the baseline in terms of how we provide long-term
care for this growing population of adults with serious neurodevelopmental pathology.
i hope you enjoyed that excerpt if you
want to watch the whole video you can go to marybarbera.com forward
slash 153 if you like this excerpt leave me a comment give a thumbs up
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