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May 23, 2022 42 mins

In our final episode, we head down to Mississippi to meet Donald at the Bank of Forest Christmas party. He’s surrounded by love and acceptance and support. But there’s one last piece of the story that we didn’t get to yet — and it’s as important as the rest of it.

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Episode Transcript

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Speaker 1 (00:03):
Hey there from my Heart Radio. This is Autisma's first child. However,
I'm neither John don Van nor Karen Zuker. My name
is Alexander Richie and I'm one of the producers on
the show and today I'll be grabbing the reins. So
episode six, Christmas and Forest. Back in December, Karen managed

(00:25):
to score some invites to the Bank of Forest holiday
shin dig The Bank of Forest is still part owned
by Donald Triplet's family, and throughout the production of this show,
I've been really immersed in the history of Forest and
learning about Donald's life. I really have come to you
Donald as like a notable historical figure. I mean, how
often do you meet someone from a small southern town

(00:46):
important enough to have a Wikipedia page about them. So
I jumped to the opportunity to go to the place
and meet Donald. It spend a few days with John
and Kieren. While John and Karen flew into Jackson from
the East Coast, I drove down to Forest from my
place in Birmingham, Alabama. It's about a three hour trip
and I always feel like I'm driving down to Mississippi,

(01:07):
coming down the foothills of Appalache down to the farmland
and sometimes down into another era. Central Mississippi is pretty
flat and the right is sort of hypnotic. In working
on this story, I got lost in the thirty foot few,
starting from Dr Lee O'Connor's paper from all those years
ago that described the puzzling behavior as this little boy

(01:30):
from Forest, Mississippi, Donald t While Donald has lived what
is by any standard, a really good life, a full
blown neurodiversity movement Capital MP has taken shape. People on
the autism spectrum can now share the same sort of
dignity and independence that is Donald's day to day reality.

(01:51):
I had so many questions about Donald's life as a reporter.
I want to get below the surface of things and
understand how people experience the world. I've learned so much
about Donald in Forest for making this podcast, but had
little sense of his inner life. Maybe I don't get it,
but I wondered if he ever feels lonely or isolated?

(02:11):
Did being on the spectrum influence those feelings? What would
it be like seeing him with his friends and neighbors.
I felt really lucky to have this opportunity to peek
in the Donald's life with John and Karen. If anybody
can help me make sense of it. They can. Three
hours later, I found myself in Forest. All right, Okay,
So I'm in uh do down Forest, Mississippi, right outside

(02:35):
the the Bank of Forest, and I'm just gonna grab
some sounds. But has that classic southern small town thing
going on. The architecture just kind of takes you back
to another time. There's a town square with a courthouse
in the middle, and all the buildings situated around it
or low and boxing and brick, and the storefronts all
have signs with that cool old typography. Square body pickup

(02:57):
trucks are driving around, and people are and ironically wearing
nineties fashions, and just like the rest of Mississippi, the
place is covered in a sort of beige pattina. It's
just beautiful now. Forest calls itself the Poultry capital of
the World, and I myself grew up in a poultry
town in North Alabama, and driving in from the interstate,

(03:20):
I recognized that earthy tang lingering in the air. I
knew I was in the right place. Karen and John
have a big weekend planned down here. Not only are
we going to the Christmas party with Donald, but we're
going to check out Beamon and Mary Triplett's house. Donald
just moved out after like eighty seven years of living there,

(03:43):
So one of the first things we're gonna do is
drop in on Donald check out his new digs. His
younger brother Oliver lived here alone right up until the
end of his life. After Oliver died, Don's nephew also Oliver,
fixed up the place, making it basically handicap accessible, just
in case. Then Donald took it over. We're back at

(04:04):
Donald's hows and we're gonna go and say hi to him.
That was John recorded the moment of seeing the new
place for the first time on a spell. The door
opens and there's done. Oh, Karen just lights up when

(04:26):
she sees you. He's small and stooped, and it looks
every inch of his eighty eight years. Yeah. I love
that tie. Yeah. Yeah, he's wearing a green blazer and
a huge funny Christmas time there. Yeah yeah, Donald was
gonna meet you. Good to meet you. Yeah, I love

(04:48):
your tie. That's awesome. Nice. Donald gave us the whole tour.
I liked him immediately. It's just impossible not to. He's
this incredibly sweet man and he's got a really particular
kind of way he walks. It's well, well, i'll let
you listen. So with Donald as a docent, we start

(05:13):
the tour. If I come in, yeah, we're gone, done
a quick tour, and then this is the kitchen. This
is the kitchen. Okay, that's why I'm a Christians. Pretty ash.

(05:38):
So you guts some presents under there? They're old photos.
Everywhere has zeroed in on wine, in particular in a
glass china cabinet looking thing of Donald and a woman
in a wedding dress. Who is this? Oh, I's a
good friend of mine. She got married on me. But
I went to Wold winning and I got that picture

(05:59):
made nice. Down the hallway, the walls are covered in
more old photos and plaque with a triplet family coat
of arms, and of course some golf trips. I think
it Bill Hayden. Yeah, Aborn University. Where's that tanjection in

(06:21):
the pro Terran church? Uh? Yeah, I'm with my middle
chips college degree in my LAMB Alpha fraternity. Typically how
long have you been here since trying the eighth of September? Okay,
you're still getting used to it. Huh yeah, I'm just
proought to get a used to it. The land, Yeah,

(06:44):
getting the l It's very nice. Donald's new place is
a smaller ranch style home that more or less blends
in with the other ones in the neighborhood. It's nice,
freshly painted, manicured lawn and a driveway that was definitely
pressure washed not too long ago. On the tour, Don
leads us to his office, or, as he calls it,
the place where he keeps his monitor in printing my

(07:08):
computer and model Knight here, Oh, very cool, and right here,
which we're not going to bed. Then he shows me
the outfit he has picked out for time or not
let me see, and his impressive collection of necktie's that's
pretty sharp. Yeah. In his office there's a big bookshelf,

(07:33):
and there's John and Karen's book in a different key,
prominently display it on the pedestal on the top shelf.
You got a book out there? Whose book is that?
He deferent? That's why I keep book about shooting you
and John? Wow, it's about you, actually, yeah, actually about me.

(07:54):
It's a beautiful moment. I could tell John was so
proud he wore this ultra high wattage smile. How does
that feel? Seeing book and with with with Donald's circles complete. Wow,
this is a beautiful picture. Oh yeah. We left Don
alone after not too long. He wanted to watch the

(08:16):
Army Navy football game on TV. Then we went over
to Marry and Beamon Triplet's old house. It's pretty Faulkner
esque pastel yellow and blue and real pretty soft pink.
For decades, the house was famous for Mary triplets garden.
She had some award winning flower beds. Now that's all gone.
The roof and the portrait saggy. Now inside it smelled

(08:38):
old and a little musty, so his just the old
sears and rope book. The house is still filled with
old furniture. You can just tell the place was gorgeous
back in the day. After his mind died, Don stayed
here on his own, and he really didn't touch a thing.
When Don moved out in September, he just kind of

(08:59):
up and left left. There's even still some pretzels and
cheesy poots and a little container on the breakfast table
in the kitchen. After his mom died, Donald was left
here alone. He shut it off, the rooms he didn't
care about, and he basically created a an apartment within
the house, two rooms away from his bedroom. There's some
black mold spread across the wall, but that's part of

(09:22):
the house that he effectively abandoned. He didn't visit it,
didn't furnish it, didn't eat it. The place did not
deteriorate all at once. It happened over time. Donald's family
for years tried to get him to leave the house
behind and find someplace new. But Donald's day his choice.
He didn't want to spend money to keep the place
up either. Also his choice. He is an adult, he

(09:42):
does not have a guardian given his priorities. It was
a rational choice. This was his home and he wanted
to be there on his terms. I mean Donald lived
in the same bedroom he grew up in until he
was eight seven. That blows my mind. Johnny Care reminds

(10:02):
me that this devout adherents, sameness, and the routine are
all hallmarks of autism from the very beginning and even today.
In the official definition that that people on the spectrum
really like sameness, they like predictability. There there they struggle
with change, and the textbook says they have restricted repetitive

(10:23):
pattern patterns of behavior or interests or activities, including this
insistence on sameness or sometimes inflexible adherence to routine or
ritualized patterns. It's not everybody, but it's a lot of
people on the spectrum. Definitely true of Donald in a
lot of ways. He totally has his routines. He gets
up every day and he goes for a walk at
the same time. He needs to be at work right

(10:44):
on time. He watches Will of Fortune at four o'clock.
And in fact, when my son Mickey and all met,
the two of them sat down to watch Will of
Fortune together because they both love that show. And this
repetitiveness and amenus it is often really comforting to people
on the autism spectrum. Anyway, back of the house, we're

(11:07):
up in the attic. Now. We've been warned that the
attic floor isn't super sturdy, are you We're not seriously
afraid that it's gonna fall though, right, yeah, I don't
feel like it's that bad. There is a little crooked
and then there's this thing here. Donald gave us okay

(11:28):
to go up there anyway and look for a carbon
copy of Mr Beaman's letter to Dr Connor. We started
referring to it simply as the Connor letter, and it's
been the great white whale of John and Karen's research
over the years. Maybe it's up here, it's somewhere, good
size addict, dude, this would be like where you would

(11:48):
definitely have band rehearsal, you know. Yeah, and there's stuff everywhere.
I mean it's jam packed with stuff, old Christmas decorations,
old golf clubs, even Beaman and Mary's traveling trunk, like
a real traveling trunk, suitcases full of letters and stuff. Okay,
John and Karen start looking around. This plays out like
any investigative journalists fever dream come to line. Sorry, just

(12:13):
having like this thing like some animals gonna come up.
Truth is, though they haven't been through everything up here.
I mean there are boxes and boxes and stuff and
suitcases packed with all sorts of papers. We were upstairs
for like three minutes and John's already finding stuff they've
never seen before. And then he discovers a batch of

(12:34):
photos from letters and postcards in this very grand old trunk.
Oh that's when she was in Venice. So this looks
like a traveling mhm. Nice fans. Yeah, you know these
were letters that the triplets Donald's parents received when they

(12:54):
were traveling around the world. I guess they did a
lot of this fun. A few us later, John runs
into stacks of love letters dating back a hundred years
to win Beamon and Mary recording, but still no Connor letter.
Brush the dust off. It's time for a break. But
after the jump, I've goked some questions about love and

(13:17):
friendship on the spectrum. So the attic at Don's house
held up and we managed to climb back down. Thank god.
I went back to my hotel and got gussied up
for the Bank Afforce Christmas party. And along the way

(13:40):
I thought that they look like Tut and Scoot to
do a little pre game man pick out. Yeah, can
I get a's like a small cute flow? Yes, mate,
that would be it. The love letters we found got

(14:00):
me wondering about Don's life. You still these photos in
his house, and it becomes really clear that he's a
person who seeks out connection and values friendship. But Don
has never been married, and he's never really had a
girlfriend either. Karen told me that there was a woman
that he was really attracted to you, but things never
really worked out. Remember how we talked about people with

(14:22):
autism being misunderstood in a previous episode. How does that
work with courtship, rituals, attraction, flirting, all that stuff that
isn't really set out loud. I asked John and Karen
about that. You know, you look at it this way,
and it's something that I've heard from a lot of
autistic people who have told me about their experiences dating, etcetera.
You talk about the language of love. It's not all words,

(14:45):
and spoken language can already be a challenge for people
in the spectrum who don't get often things like sarcasm
or innuendo. But the language of love, a lot of
it has nothing to do with words. It's a glance,
it's a raised eyebrow, it perhaps the way you move
your body. These are all very very social, subtle signals

(15:05):
that were you know, most of us instinctively kind of
pick up on over time and we learn how to
speak that language. But it's far more challenging for people
on the spectrum. You know, But just think of a
thing like eye contact. You know, when two people meet,
as they say, their eyes lock. But what if you're
a somebody who doesn't know when to look away. What
if you stare too long? That's then called staring, not

(15:26):
looking lovingly, not making eye contact, that's that becomes something
different than can really really be a challenge for people
in the spectrum to know what the timing on something
like that is. Look, it's hard enough for all of us,
but when you have trouble with those social cues that
have nothing to do with what people literally mean, that
they mean what they say and say what they mean,
which isn't always true in this kind of dance, that's

(15:47):
when it gets really really challenging for people on the spectrum.
So on the drive from Forest to downtown Jackson, and
I'm crushing this coke float and I started thinking about
the big universal themes running through this love, kindness connection,
affording others respect and dignity, resilience. I think those intangible
things I just listed are are part of the story

(16:09):
that are going to endure for me. Now, I'm excited
to see Don surrounded by folks from the bank. Karen
and John told me he's been tight with a lot
of these people for years, and I'm wondering what Don's
friendships are like. Through all my interactions with John and Karen,
I'm not sure I've ever heard them talk about Donald
having any friends and Forest who are also on the spectrum.
It seems like maybe all his friendships are with neurotypical folks.

(16:32):
I imagine building a lasting bond with somebody who lives
their life in a different key can be difficult. Here's
what John and Karen told me. I mean, people in
the spectrum have told us that the reason they struggle
so much is they actually do want to make connections
with everybody, and they just don't necessarily know how to.

(16:52):
They like all of us, They just they really really
want to be loved. It's often hard for people with
autism to connect, and sometimes it's the rest of us
who needs to go more than halfway in order to
start a relationship. My nephew Sam has known Mickey his
whole life and they've never really connected. But after Sam
saw our movie, he learned that Mickey was obsessed with cats.

(17:16):
The next time Sam saw Mickey, he went up to
him and he me out and that was it. They
had the basis to start a conversation. Sam had met
Mickey more than halfway and they connected. I'm glad you
brought up Mickey's obsession with cats, Karen. It actually reminds
me a lot of a conversation we had with Dr
Pete Gerhardt relationships and friendships are bidirectional and not doing

(17:40):
him many favors just by saying, Okay, I'm gonna talk
to you about cats for the next forty five minutes,
because that he thinks everybody's going to talk to him
about cats for forty five minutes, you know. And I
think Mickey and I also have enough of relationship because
I don't want to talk about cats right now, and
then we'll have like one or two converse one or
two sentences on something else and try and slip back
to hats because he's smart enough to know, Okay, I

(18:02):
think I can goosele this back in now, you know.
But I also kind of respect that about him, um
that he does that. But he also I don't think
he's ever gotten upset with me when I said I
don't want to talk about that or I don't want
to Can we talk about something? Let's talk about something
else right now. Yeah, I did say I'm not gonna

(18:23):
well because I talked to him like he's a He's
not a client, you know, he's a colleague. He's a friend.
Like I don't know him as a as a client
in any sense of the word, Like yes, I've given
you advice about what I think, and you know, point
in some directions. But um, I talked to him like

(18:46):
I would talk to anybody else, and I think that's
um both appropriate and respectful. And what he told us is,
if you really want to experience true emotion, you should
have a relationship with someone on the autism spectrum, because
there's no pretense. If they like you, they just really

(19:07):
like you. If someone with autism is your friend, they
are truly your friend. When they're happy, there's no hiding it,
and when they're sad, you can't miss it. When you
meet someone with autism and you have a relationship with them,
it's the real deal. I don't know if Don has

(19:37):
anybody in his life who challenges him or talks to
him in the way that Pete Gerhardt does with Mickey,
but I do know that Donald's daily routine, if you
stand back and take a look at it, is really
built around points of connection with the people at Forest.
It seems like everybody in his world is neurotypical too.
So every morning he goes to a coffee shop, sits

(19:58):
around with a bunch of other old deeds. Then in
the afternoon he heads over to the bank. Playing God
Scrambles with two or three other people at a time
puts him in extended contact with people, and not just
familiar friends, but strangers for hours at a time. We
want to take a quick break, but after that it's
party time. The Bank of Forest Christmas Party was actually

(20:23):
held in downtown Jackson. It's the capital of Mississippi and
also the nearest big city the Forest. When we arrived,
Don still had on his Christmas tie and the green
blazer and slacks he showed me at his house. He
looked great. It's worth mentioning that Donald Triplett loves the holidays.
Every year, he even dresses up as Santa for the
Bank party, and he's famous for giving highly unorthodox gifts.

(20:47):
Year after year. He gives his family cheese, graders and bachelor's.
Karen asked his nephew's wife, Ingrid about it. Oh, yes,
I get, yes, and sometimes I mean when he travels,
he'll bring you back different little things from places, so
key chains and magnets and things. But at Christmas, I

(21:10):
usually get some wine doesn't get in my family. Yeah,
and they might get something. I don't know what he gets.
I can't remember but when the kids get things like that.
The Bank Christmas party event is a blow key business
casual affair, open bar, solid buffet with a salad station,

(21:32):
yeast rolls, and over there in the corner there's a
guy carving pork line under a hot lamp. So, instead
of following Donald around all night with a microphone, I
decided to pin a little lab mike to the lapel
of his green sports coast recorded. Then, from a distance,
I watched Donald do his thing, hang out, Hey, sure,

(21:55):
go to shure you again? Hey, good good. Once we
got into the party, Donald navigated the crowd like a
seasoned politician, saying alone, shaking hands to everyone he passed,
and eventually meandering up to the bar red one. Don

(22:17):
keeps it light. I'm just quit playing golf checkboard and
I'm playing on the scramble. And that's about as deep
as it gets. Though. He assigns numbers to new friends,
and he makes up creative nicknames like Drew the Clue
or Celestial Celestie. Hey a lot of Donnie, Hey, Drew
the clue. All right, good to shoe you again. And

(22:38):
it doesn't take me long to realize that Don has
a soft spot for female attention. Hey, don or foreman,
I've been showing you a car park the grant, but
I had been showing you the whole thing. With Donald
flirting with these women, it's kind of a game they

(22:58):
all played together, little bit of a conversation all of
its own. You know, he was beloved by them, and
he's also respected by them. Some of them kind of
look after him, and all of them know that he
loves the attention, so they give him that attention and
it's kind of their way of connecting back to him,
some of the blonds. Right then, someone asked, who is

(23:23):
your favorite lady? So if you number one girl? If
your number one? Then Donald rattles to the list of
other women he fancies Brianna and uh okay, So Don's

(23:45):
go to maneuver when he's flirting is shooting them with
rubber bands. Hey, hey, Howard, rubber band. He carries a
bunch in his pocket and doesn't leave hung without them,
and the ladies flirt right back. No, you got me.
The rubber band routine is pretty funny and it's really endearing.
At one point, Donald flicks a woman with a rubber band,

(24:06):
and then he asked for it back so you can
hit another woman. Nick Hey, it's really clear that Don
fells at home with these people. He's having fun and
they're having fun with him too. Hip the one. Then
he sits down at a big round table, surrounded by
wind and their husband's all lingered not too far away,

(24:30):
pounding back long necks of the silver bullet. Everyone is
settling into full party mode. I'm gonna goog you. Conversation
moved to holiday shopping good. He's still talking to Melanie.
Remember she's his number five girl. A few minutes later

(24:51):
the speeches started. The president of the bank handed the
microphone to Karen. John and Karen are legit celebrities and Forest.
Let's give him a warm Bank of ours welcome a
combination of the love of the community of Forest and
Don and we're proud to have been able to be

(25:12):
a part of all in this, So thank you for
the Bank of Forest. CEO Alan Breeland got back up
and gave some remarks. There was dessert and some coffee,
and that was pretty much the night. On the surface,
it seemed like a pretty typical company Christmas party, but
seeing Donald in action answered so many of my questions.

(25:33):
The Donald that shows up in Dr Connor's paper on autism,
seems so alone, so disinterested in the company of others. Yeah,
the Donald I met on my trip to Forest, that
wasn't him. He grew, he adapted. What I saw was
a man doing his very best to find connection. When

(25:53):
I got home from Forest, I couldn't avoid thinking about
Donald's parents marrying Beamon triplet and ultimately all they wanted
was for their kid to live a life of independence
and dignity. Mary Triplett believed that she and Beamon had succeeded.
In nine, when Donald was thirty six or so, she
wrote a letter to Dr Connor. Somehow she knew that

(26:15):
her little boy would make it. He would make his
way in the world outside of an institution. While Don
is not completely normal, he has taken his place in
society very well, so much better than we ever hoped for.
If he can maintain status quote, I think he's adjusted

(26:36):
sufficiently to take care of himself. For this much progress. Oh,
we are grateful now. Dawn's never had any medications for
his emotional trouble. I wish I knew what his inner
feelings really are. As long as he continues as he
is now, we can continue to be thankful. My guess

(27:03):
is that Marion Beamon didn't want anything all that complicated
for Donald, just that he'd be safe and protected, loved
and happy. They wanted him to have what I want
for my son, Mickey, just a place in the world.
So it's really wonderful that that's how Donald's story turned

(27:25):
out in the end. Yeah, I mean when we first
reached out to him, oh gosh, that was years ago.
At the start, we didn't know what we would find
in terms of how his life went. So it was
so good to discover that Donald was happy, that he
had lived so fully and so independently and so surrounded
by love and acceptance and support and community. And we

(27:47):
got to tell that story in our book and in
our movie and in this podcast. But there's one more
remaining piece of the story that we didn't get to. Yeah,
and it's as important as the rest of it. Okay.
So Donald was named case number one when Dr Leo
Connor wrote that article describing autism ine and he built

(28:08):
his description of autism around several of Donald's behaviors, but
not just Donald's. Donald was case number one, but Dr Connor,
in the same article talked about some other children. Yeah,
he described Case number two, a boy named Frederick, Case
number three, a boy named Richard, Case four, Paul, Case five,
Barbara six, Virginia, all the way up to Case eleven Elaine. Now,

(28:32):
Connor always made it clear that Donald was the child
who started it all for him, where he first recognized
the hallmarks of autism. And he made it clear that
he based most of his first portrait of autism on Donald.
That's why he was case one. He really was where
it all started for Connor. But the other kids, they
played a role to. Their lives were also folded into

(28:53):
the portrait Connor created. And how did their lives turn out?
Cases too through eleven, Well, Connor got curious about that too,
so he had his staff research that, and about a
quarter century after he saw them as children, he published
a follow up article that revealed how Donald's happy story
really was the exception. So all of the kids, of course,

(29:16):
were middle aged by the time Connor looked into what
was going on. Some of them his staff couldn't even
find one other like Donald, had enjoyed a pretty good
life out in the community, but most of the rest
they had been put in institutions. Some foot Connor reported
in his follow up is heartbreaking, and some had been
shifted over the years from one institution to another. Like

(29:38):
Charles N. He was transferred to the State hospital at
nine fifty He is still there now thirty two years old.
Or Elaine C. In nineteen fifty one. She was transferred
to the Hudson River State Hospital. She is still there.
She is now thirty nine years old. These kids, Connor

(30:01):
said in a really revealing phrase, all lost their luster.
Several of them sort of wilted. They stopped being interested
in the things that used to interest them. They lost
some of their unique skills, or at least interest in
engaging those skills. One cannot help but gain the impression
that state hospital admission was tantamount to a life sentence,

(30:25):
sentenced to being forcibly separated from society, isolated, invisible. So
why those kids and not Donald. Part of it, as
we went over in an earlier episode, is that Donald's
parents were confident enough and had the means to stand
up to experts and insist on making him visible to
the world, very visible. But there was something else going on.

(30:48):
Those kids had challenges Donald didn't have. They were either
intellectually disabled or unable to use speech, or both, and
in a way they were invisible because of the intensity
of those challenges, which society did not know how to
engage with or didn't want to. And in fact, there's
a parallel thing happening today, not the institution's part, but

(31:11):
the invisibility part. Yeah, a really profound thing happened over
the last twenty five years or so. During that time,
the definition of autism changed radically. It became a lot broader,
and the criteria loosened up a lot, so that people
who would not have been diagnosed with autism in the
past now do get that diagnosis. For instance, Asperger syndrome.

(31:33):
It used to be its own diagnosis. Now it's officially
considered out of date. People who previously got that diagnosis
now have autism. So the term autism now applies to
many people who, despite challenges, are nevertheless able to live
independently and to speak for themselves and to speak up
for themselves, to go to college, to start a career,
to find a partner, even as they struggle socially and

(31:56):
face other more subtle but really pervasive challenges. Some are
specially brilliant people, and it is great to see autistic
pride and the energy of the neurodiversity movement, which is
led primarily by this group of autistic people, people like
John Robison and Amy Guarno, who you met earlier in
the podcast. And it's great to see Hollywood getting the

(32:16):
message creating shows now around smart, sympathetic, even inspiring autistic characters,
their surgeons and lawyers and detectives. There's just one problem here.
It's not the whole picture, not at all. There are
a whole lot of people who can speak for themselves
and that's fantastic, but there are many people on the

(32:36):
other end of the spectrum who can't speak and are
not heard today. They're the ones who are invisible. They
are people whose autism comes with behaviors that are huge,
profound challenges to living an independent life. Close to half
of people with autism have intellectual disability. I think about
a third are nonverbal um I think have co but

(33:00):
psychiatric diagnoses. I've seen kids who kids who have to
wear helmets and armstays to keep them from bending their
arms because as soon as you release them, they punched
themselves in the face hundreds of times an hour until
they detached their own retinas. You know, I've seen autistic
teenagers that still have to wear diapers that um, that

(33:23):
have no language at all. That's Amy Lutts. She has
a son named Jonah who's in his twenties. Now Hollywood
doesn't make shows about people like Jonah who is only
able to communicate with very few words. Nope, no Broadway
shows either. Some of the realities of Jonah's life just
can't be romanticized, like how when he was a child,

(33:44):
how violent he could get, which is not unusual with
the kind of autism he has. No one wants to
hear about about the autistic person that attacked his mother
or smashed his head against the floor, Like that's a
really disturbing story. And when people say autism is on
a spectrum, what they mean is that it's not like

(34:05):
a condition that where either you have it or you don't,
and if you have it, you kind of look like
someone else who has it. What it means by spectrum,
it means is a very broad range of impairment, and
it might be extraordinarily mild at the highest end, or
on the more severe end, the disabilities can be very profound.

(34:27):
There's a lot of disagreement about what single word appropriately
captures these manifestations of autism, whether it should be called
severe autism or profound autism or something else. But we're
talking about the population of diagnosed people, but for having
mothers and fathers who are out there fighting for them,
they are invisible in the current conversation around autism. And

(34:49):
supporting those children daily, often round the clock, becomes the
defining commitment of these parents lives, even to the small
things you don't think of in Amy's case, like the
hardware on the front and back doors on the inside. Um,
we have code locks on our door, on all our
exterior doors where you have to put in the code

(35:11):
to enter or to leave the house, which was the thing,
the kind of the tool that we found that finally
stopped the elopement that had kind of exposed Jonah to
a lot of risk when he was a lot younger.
We've had these locks for a year so UM. But
when Jonah was younger, he would find a way to
slip out someone, you know, he'd get out the front door,

(35:33):
he dropped out of some windows. Now our windows all
have locks, and several times we found him at the
base of our driveway as a busy road. We found
him walking down um this busy road on his iPad,
you know, with traffic stopped on either side, while somebody
tried to coax him out of the road, and somebody

(35:54):
else called the police. Now, to be clear, we've met Jonah,
Karen and I. We've spent time with him, and he's
a great guy. Connecting with him just takes more effort
than maybe most of us are used to, but everybody's
going to make the effort. In fact, we wish Hollywood
would make more movies about people like Jonah. There could
be some really cool scenes. Jonah loves to spin. He spins.

(36:17):
I don't know that he spins every day, but he
spins sometimes. He spends many times a day. It's one
of the I mean, he looks like Scott Hamilton on
ice skates. Sometimes he spins so fast, and my other
kids sometimes try to spin with him. Nobody can keep
up with him. We're just not capable of spinning like that.
And sometimes he slows down. And sometimes he kind of

(36:41):
holds his fingers in front of his eyes and looks
into the light, and you know, I kind of wonder
what he's looking at as the world kind of spins
around him. The other thing about Jonah's life is his
family is so there for him. He's got four brothers
and sisters, including a set of twins, so there's a
immunity right there, and they totally have his back. One time,

(37:05):
when my twins were maybe like five or six, and
they had one of those birthday parties where you invite
the whole class, one of their classmates said afterwards, you know,
if you you know, if that kid who goes is
there your next birthday party, don't invite me? And uh,
and the twins were like, no problem. You know, they

(37:25):
didn't invite him. He never came over for a play date.
You know, they were not going to be friends with
somebody who who was like that. I just love that story,
but unfortunately, the undertone to it is that people like
Jonah still are not welcome in a lot of places,
that their degree of disability makes people uncomfortable, which is
part of what keeps them invisible in the larger conversation

(37:47):
around autism, or as Amy summed it up, you know,
I think severe autism and severe as Jonah's. You know,
I don't really know how many people are affected, but
it's not you know, you don't see people like doing
out in the community all the time. A lot of
people who have it are are isolated, they can't go
out in the community. And I think this is going
to be a really important, you know, window into that

(38:10):
into that life and into those people who do struggle.
You know, even the people doing science about autism are
part of this problem. A few years ago, the Journal
of Autism and Developmental Disorders reported that the number of
studies that include people with severe autism as participants had
dropped sharply between the early and the early two thousand
tents to only thirty and the article suggested that one

(38:34):
reason this was happening is that scientists newly entering the field,
as research funding began to go up, we're less quote
comfortable with investing in more severely affected individuals, less comfortable
with them. Wow, what a difference from how Lee O'Connor
engaged with the kids he wrote about Donald and the
others and the parents of those kids. And that matters too,

(38:57):
because in almost every case pay are and so the
main support system for their kids for their whole lives
until they're gone. And then what when the parents are gone. Well,
one last time, to Donald Triplett when his parents died.
He had a community that had his back a lot
of other advantages too, but without that community, his story

(39:21):
would not have been such a happy one. So, Karen,
let's close with our favorite story about community. Okay, So
this is a story about an incident on a bus
and a young man named Nicholas, whose autism was of
the most challenging kind. He was not able to speak,
and he found learning very, very difficult. But if he

(39:41):
could learn how to use the bus system, that would
open up his whole world. So for weeks, he and
a teacher worked at learning how to use the public
transportation system in a small town in New Jersey. And
for days and days and days, he and the teacher
rode back and forth on the same route as the
teacher taught him how to ride the bus, and out
of other people during that same time of day happened

(40:02):
to be riding back and forth at the same time,
so they saw these lessons going on, and the point
came where things were going so well that Nicholas was
able to sit alone on the front seat and ride
the bus back and forth while his teacher watched from
the back. And then one day, the bus came to
a stop and two guys got on the bus and
they sat down behind Nicholas, and they were not regulars

(40:23):
on that route who had been watching this thing going
on day after day. They sat down behind Nicholas, and
as the bus began to move, Nicholas began to rock
back and forth and to flip his fingers in front
of his eyes. He was stimming, as they say, and
he began to vocalize, and the reaction from the two
guys sitting behind him, they began to mock him, and

(40:44):
they began to lean into him and to bully him, like, hey, man,
what's wrong with you? What's your problem? And then all
of a sudden, this other writer from the bus jumped
up and he looked at these two guys and he said, hey,
what's your problem. He's got autism. Why don't you just
back off? And the thing we think this story tells us,
it's the same thing we saw happen in Forest. It

(41:06):
shows that when a community leans in and and sometimes
even goes more than halfway, it really isn't so hard
to have the back of someone who's different. It's not
that hard to provide the decency and support implied by
the word community. It happened in forest, it happened on
a bus, It can happen anywhere. I'm John don Van,

(41:32):
I'm Karen Zucker. Autism's First Child is a production of
School of Humans and I Heart Podcasts and based on
our book and documentary film in a different key. Production scoring, mixing, mastering,
and sound design by Alexander Ritchie. Our story editors are
Matt Riddle and Alex French, senior staff writer at I
Heeart Originals. Original score composed and mixed by Alice McCoy.

(41:57):
Voiceover is by Louis Carloso and Missy Ritchie. Executive producers
are Virginia Prescott, Brandon Barr, el C. Crowley and Jason English.
Special thanks to Ray Conley, Ernie Indradot and Will Pearson.
School of Humans
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