This program contains footage of children in distress, including historical medical treatments that may be disturbing.
Viewer discretion is advised.
MAN: If you like, would you please have a seat right here.
- Thank you.
Uh, what should I say?
FILMMAKER: We wanted you to talk into the lens.
(clapperboard clicking) Hi, I'm Isabelle Piwniky, but I prefer to be called Izzy, or Iz, or Izzymeister.
And I'm autistic.
I am autistic.
I am on the autism spectrum.
I have autism.
I have autism.
AUTOMATED VOICE (via phone): I have autism.
If somebody came up to me on the street and asked me what autism looks like, I'd probably say you're looking at it.
CAREN: Can you tell me a little bit about autism?
Uh... what's autism, Caren?
♪ ♪ CAREN: What is autism?
Now that's complicated.
MICKEY: Hydrogen, helium.
CAREN: Because the number of ways to be autistic... MICKEY: Lithium... CAREN: ...is infinite.
MICKEY: Beryllium, boron.
(bird cawing) ♪ ♪ 73 Tantalum.
74 Tungsten, 75 Rhenium... CAREN: Take a man who finds comfort walking around naming all the elements of the universe.
MICKEY: 79 is gold, 80 mercury.
81-- CAREN: He has autism.
- 82 is lead.
83, B-I, Bismuth.
84-- CAREN: He's also my son, Mickey.
♪ ♪ All the years I've known him, Mickey has been teaching me more about autism than anyone.
It's been an adventure for both of us.
But as a journalist, I've also spent years looking into how the world has responded to autistic people.
And on that journey, I found darkness.
MICKEY: 25 is Manganese... CAREN: But also found real reasons to hope... MICKEY: 26 Iron... CAREN: ...that people like Mickey, and everyone who is different, might still get the chance to belong.
To really belong.
♪ ♪ (in car): So what's next?
MICKEY (in car): 1.1 miles, the destination is on the right.
ANNOUNCER (on speaker): In 1.1 miles, the destination... CAREN (voiceover): And thinking about all of that, I brought Mickey with me on a trip to Mississippi, to meet a friend I had made.
I'm excited that you're here.
I'm excited to introduce you to Donald.
CAREN (voiceover): Someone from a small town, who I got close to when writing a book about autism.
So, do who Donald is, Mickey?
ANNOUNCER (on speaker): Make a U-turn at Earl Johnson road.
(stammering): He has autism.
CAREN (voiceover): And whose story is where my journey began.
♪ ♪ (birds chirping) CELESTE: I've always known Don.
I don't remember not knowing Don.
VIANNE: We knew that Don was a little different.
JOBYNA: But what it was, we didn't know.
♪ ♪ CAREN: They call him Don, but I first knew him as Donald, Donald T. That's how his name appeared over 70 years ago.
It was in the first medical article that fully described a new diagnosis in children that we call autism.
And in that article that described several children, Donald Gray Triplett, was described in way more detail than the others.
And he came first.
He was, literally, case number one.
And how did life turn out for him?
How much did he get to belong?
To grow, to love, to be loved?
Autism's first child.
♪ ♪ ♪ ♪ (marbles clacking) My mother taught me how to drive.
I, I was sort of a late...
I was actually 27 when I got my driver's license.
I just enjoy doing it.
Of course that's the Bank of Forest right there.
Hey, Shelby Welby.
- Hey, Donald.
- Hey, Nat the Cat.
- Hey, Don.
- Hey, K.H.
- Hey, Don.
He comes to the bank every day at 2:00, you know?
Makes his rounds.
Hey, Big Debbie.
Hey, Tricky Nick.
CELESTE: He really brightens our day at the bank.
- Hey, Jan with a plan!
- Hi, Don darling!
Don is a very loving person, and we enjoy seeing him every day.
You know, he's just a lot of fun.
♪ ♪ CAREN: In 1937, when Donald was three years old, he was placed in an institution.
And it was called the preventorium.
A preventorium used to be a place where children at risk of getting tuberculosis were kept separated from society.
But sometimes, families that were well off, they would actually place a child there for a different reason-- if the child was hard to manage, or even just different.
Donald was one of those children.
TRIPLETT: So there was a preventorium and sanitorium, a little community in Simpson County just south of here.
Of course they assured my grandparents, from what I've gathered that that's what was expected for them to do.
That's what was accepted at that time.
My name is O.B.
Triplett, and, um, Don is my uncle.
Beamon Triplett was Don's father and my granddad.
He was born in 1902.
Was a lawyer here in town, and he grew up kind of poor, but his momma scrimped and saved and managed somehow to get him to Yale.
And he graduated from Yale and opened a law practice here in Scott County years ago.
So he was settled here and wound up marrying my... well, married my grandmother.
Her name was Mary McCravey.
So they're just a young couple starting out.
And I think they built the house in maybe in the early 1930s.
And I, I think they ordered the plans out of the Sears Roebuck catalog, and they had just kind of an idealistic life here in rural small-town Mississippi.
And Don was born, and everything's good, and then as Don gets a little older, they start picking up things are different and realized that something wasn't quite right.
Of course, at the time, autism wasn't even a word.
Nobody knew, you know, about it or anything.
She, she was under the impression that, you know, perhaps he was insane.
CAREN: You know, I first learned about Donald when I was doing research on autism, and I learned that he was institutionalized based on the very first study written about him in 1943.
John Donvan and I were working on a book on the history of autism.
He and I had produced stories on autism for 20 years for ABC News.
John was on-air talent, and I was a producer behind the scenes.
I have a brother-in-law with autism and because of that, Donald being institutionalized so young really shocked Caren and me.
But then we started to understand that's what parents of children like him were told to do back then.
And they did.
♪ ♪ PETE GERHARDT: You know, institutions were developed with all good intentions, it was to protect the innocents with disabilities from the evils of society.
But that didn't really work.
(chuckles) That turned out to be kind of a very expensive bad idea for many, many people.
JOHN: They became dumping grounds for the unwanted.
And families were pressured even to keep the existence of a disabled child a complete secret.
Shame became inextricable from disability.
So families complied with the pressure to institutionalize.
And that's what Donald's parents did.
Well, I certainly think it's chilling that 50 years ago, people on the spectrum were locked away.
It's hard to imagine that someone like me or even someone that was... maybe had a lot more struggles than I did would be locked up and just put away.
(film reel churning) CAREN: But then something happened that would save Donald's life, and alter history.
Mary and Beamon Triplett changed their minds.
I think one day she said, "You know what, I'm not doing this.
I am not doing this.
You know, it doesn't feel right."
And so they went and got him, put him in the car-- probably a Ford, Granddad liked Ford.
Anyway, you know, and then headed back up here.
And then were going to turn the page and start another chapter in the life of Don.
CAREN: And then she did everything she could to make him part of the world.
TRIPLETT: One day, granddad went to his office, and dictated a letter, 33 pages long, and it was a description of Don.
What he, I guess, had observed, he and Grandmomma had observed.
JOHN: So this description that Donald's father put together is truly historic, because although it was written by an amateur, by a dad, it would go on to be quoted again and again as one of the best and earliest clinical descriptions of what today we call autism.
♪ ♪ TRIPLETT: "He seems almost to live within himself, "and seldom comes to anyone when called.
"He seems to almost to draw into his shell, oblivious to everything around him."
JOHN: Some of what Beamon wrote was focused on Donald's unusual strengths when he was a one-year-old.
TRIPLETT: "He knew the pictures of the presidents "and the alphabet backwards as well as forwards, and has an unusual memory."
JOHN: But Donald's dad also shared things that worried his parents.
His language was very different.
When he spoke, he reversed the way pronouns are supposed to be used.
He was obsessed with sameness.
So if the furniture in a room was moved around, he would have wild tantrums.
And if he was handed any object, all he would do is sit there and spin it, for hours and hours, but he looked through people as if they weren't even there.
TRIPLETT: "He appears to be always thinking and thinking, "and to get his attention "almost requires one to break down a mental barrier between his inner consciousness and the outside world."
JOHN: Donald's father finished the letter in September of 1938, and then he mailed it to the world's leading child psychiatrist, who was at Johns Hopkins in Baltimore.
DR. LEO KANNER: In 1938, Donald T., five years old then, was brought to my clinic from Forest, Mississippi.
JOHN: Leo Kanner was fascinated by Donald's combination of behaviors, and also puzzled by them.
And it took him some years trying to figure out what they signified.
I went there three times: 1938, 1940, and 1943.
JOHN: And in studying Donald, Kanner had this epiphany, that the categories that people like him would have been placed under back then, like feeblemindedness or insanity, that these represented the wrong diagnosis, and we're not just talking about Donald.
Donald Triplett very likely was not the first person (chuckling): to ever have autism.
There were very likely many people who were autistic, who were grouped into other categories or diagnostic groups that also hadn't been refined yet in terms of our knowledge.
JOHN: But it was Kanner who did something about that.
He put together what he saw in Donald with some observations he subsequently made in ten other kids and he applied the term autism.
And in 1943, he spelled it all out in the article that introduced this whole diagnosis to the world.
And that's how a little boy from Mississippi got to have a place in history.
♪ ♪ ♪ ♪ CAREN: I had heard that the first person diagnosed with autism might still be alive, and he might be living in this small town in Mississippi.
My first reaction was... Wow!
And I dialed this phone number, and I heard this voice.
I think I found him, I think I found Donald Triplett, I think this is the guy.
How are ya?
DONALD: All right, Caren.
- Good to see you.
- Good to see you too.
- You look great.
- I haven't seen you in so long.
(Caren laughs) - So look what I found.
Is that your graduating class?
- Oh yeah.
- Where are you?
- Yeah, that was taken late in 1952.
- And how old were you?
- I was...
I was 19 at that time.
(people laughing) CAREN (voiceover): So after I got to know Donald, I got to know a lot of his friends and neighbors.
- But I didn't get Archie, I got John instead.
CAREN: And I got to hear their stories about him.
Don assigned everyone that he encountered numbers.
He loves to give numbers to people and he's been doing that since when he was in high school, I think.
Oh yeah, yeah, he gave me a number 61 or 62 years ago, 569.
I could call Don right now, say, "Don, what's my number?"
DONALD: That's Jon Rushing.
He's one of the people I gave numbers to.
His number is 192.
DONALD: One, two, three, four, five.
CAREN: Donald's thing with numbers, it reminds me so much of Mickey.
Europium, Zirconium, Lutetium, Vanadium... CAREN: They both have their unique way of organizing the world.
JOHN: Working with Caren all of these years, I've spent a lot of time with Mickey.
And yeah, he has a lot of things in common with Donald.
But I've also noticed he's got his own things, and one of them is that he is really connected to his mother.
CAREN: Depending on the day, Mickey can call, you know, 12, 13, 14 times a day.
- That was my mom.
He always calls first thing in the morning.
And Mickey talks a lot.
(laughs) (phone dialing out) MICKEY (on phone): Hello, Mom!
CAREN (on phone): How you doing sweetie?
MICKEY: You know in the periodic table?
CAREN: Ummm... MICKEY: I made my bed be like the first 102 elements of the periodic table.
CAREN: Wait, what?
What about the periodic table?
MICKEY: There was 102 in the bed also.
Me and 101 animals.
CAREN: Oh, you have 101 animals back in the bed again?
CAREN: What happened to just having 20?
MICKEY: It's like the periodic table almost.
CAREN: The 102 is like the periodic table?
I think you should do whatever makes you happy.
MICKEY: I love you, Mom.
CAREN: I love you, sweetheart.
(voiceover): Mickey grew up in New Jersey with us, but he lives in Arizona now.
(indistinct chatter) He's part of a community of adults who need support, and he has that there.
MICKEY: Throwing... Around the... - Throwing around the bad pigsties.
(laughs) - No, that's not a football phrase.
CAREN: You want this on the plane?
- Don't eat it all.
- Old King Cole is a merry old soul and a merry old soul is he.
- Okay, so why are we doing that?
(voiceover): He's in a program where he's got his own apartment, and they're trying to teach him how to live on his own.
- Love you.
CAREN: Mickey is this young man who's trying to find his way to navigate the world.
- No, no, no, that's the flight number.
All right, I'll see you soon.
CAREN (voiceover): I hate that Mickey lives so far away, but there are just so few programs of any quality that help adults with autism achieve that.
At least close to us.
So Mickey, he's lovable and charming and sweet, but he's really, really vulnerable.
And he's out there in the world, and he doesn't have the skills to know that he can be in danger.
(ship horn blaring) As a mom, but also as a journalist, I've learned that because of basic misunderstandings, so many bad things can happen to people out there who have autism.
DISPATCHER: 9-1-1, what's the address of your emergency?
MAN: 1010 Stellar way.
DISPATCH: What's the problem?
MAN: There's an individual that's harassing us.
He's trying to force his way into our car.
(beeping) There's a 9-1-1- call from a subject, states that he has a subject that's trying to get into his car.
He has no idea who the subject is.
OFFICER: Headquarters 13-10-8.
Are they fighting?
DISPATCH: That's negative.
- Do you have an ID on you?
- No I don't.
- Put your hands behind your back.
- Stop resisting!
Get the cuffs on him.
- Andy, can I go, please!
- Nick, stop!
- I wanna go home!
JUDY (voiceover): When I saw Nick in handcuffs, I knew he was in a lot of trouble, in a lot of trouble psychologically.
Nick's crime was checking mail while autistic.
There's no question about it.
And he stopped and talked to somebody and he should not have.
♪ ♪ (boat engine humming) BOB (voiceover): Nick is such a easygoing, kind person.
You know, I mean, it was surprising that somebody would be so rough on him.
Other way, other way, other way, other way.
There you go.
Everybody knows Nick in town.
He's been here most of his life, I mean, and everybody knows him.
You know, he makes the dog tags, and he's all over town with this... with the people that work with him.
MAGGIE: When I first started going out in the community with Nick, it was such a warm, accepted feeling all the time.
VERONICA: Anyone who knows Nick knows that he is the most easygoing... (sighs) passive kind of guy.
CAREN: He has these routines, and a schedule that includes walking down the street every day to get the mail.
Another thing he would do is he would look into the parked cars along the way, to make sure they were all locked.
But the guys who called the cops on Nick were from out of town, and they just didn't know him.
They tried asking him, you know, a couple of questions that it was kind of challenging to answer because he has autism.
- Do you have an ID on you?
- No, I don't.
JUDY: Nick's never been in trouble in his life.
I had no idea what was going on.
I thought maybe somebody was hurt or... because there was an ambulance and so on and so forth.
I had no idea.
- I wanna go home!
- I'm going to spray you!
- Do you know this person?
- That's my son.
What are you doing with my boy?
- He was trying to get inside this car.
- Yeah, yeah, yeah, he does that from time to time.
- He went to check the mail.
- So what happened was, they thought he was trying to steal the car.
- I know, I know what you're saying.
- He has autism.
We pepper sprayed him.
We didn't know he was-- - My God!
I can't believe you pepper sprayed him.
- Ma'am-- - How dare you do this?
Oh... (voiceover): And when I saw how battered he was, it was really...
I just needed to get him to safety.
How dare you?
Do you hear him saying, "I'm sorry, I'm sorry?"
- Ma'am, I'll talk to you after.
- I said, "What did you do?"
No, I'm talking to you now.
- What did you do?
"I don't know what I did."
He looked in a car?
I turned around and asked him why there were, um... hand prints around Nick's neck and nails dug into his neck.
Do you see the bruises on his neck?
- Can you explain how this happened?
Because he was resisting.
- Oh my God!
So you pepper-sprayed him and choked him?
You choked my son?
- We don't choke people, ma'am.
VERONICA (voiceover): Mistakes happen.
Even really bad ones.
But your ability to own them... Ma'am, let the medics-- VERONICA: ...is a sign that you can move on, that you can say "I learned from this."
- Okay, that's refusal then.
That you can at least learn from it.
Obviously, law enforcement survives and thrives on communication, and by definition, autism is a communication disorder.
CAREN: You know, police departments around the country are really trying to solve this problem.
- Some individuals, obviously, may not be able to make eye contact with you.
- There are a lot of medical and mental conditions that create the same effects as somebody that has autism.
- For our students and residents, you can just come on in.
You're going to sit next to an officer.
- And what about that right there?
- That's pretty scary.
CAREN: Police need to understand people with autism better.
And people with autism need to understand the police as well.
- I like how it talks, that's great.
CAREN: I signed Mickey up for one of these classes because I can so easily see him innocently getting into trouble.
He'd be afraid of something, he'd run away, he'd do all the things that you shouldn't do.
(train honks) We want Mickey out in the world on his own, and he's worked so hard to learn how to do so many things.
- Is that policy still a rule to show my bracelet?
You did great, thank you.
- But what if I'm wearing a long-sleeved shirt and it can't be seen?
- Well, I know you, so.
- I know that a lot of you are getting ready to graduate from the program.
CAREN: His program in Phoenix is all about the things that are still really challenging for him.
- What else?
- Ability to differentiate between wants and needs.
- Okay, what's a want?
Give me an example of a want.
- A want: video games.
- Okay, but what's a need?
- Your clothes.
(birds twittering) (knock on door) EDDIE: It's Eddie.
CAREN: Mick gets a lot of teaching and coaching.
- Good morning, sir.
- I'm leaving at 9:30.
- Okay, good.
CAREN: He still has a lot that he can learn.
- Did you brush your teeth?
- I did.
- Did you put on your deodorant?
- I did.
- You did?
- What kind of deodorant do you use again?
- I use Sure.
Is it the stick or the spray?
- A stick.
All right, Mickey.
Well, you go out and conquer today, okay?
CAREN: But if Mick's really gonna make it out there, I need to know that everybody else is ready to make room for him.
And it's not just Mickey, it's everybody who's different.
♪ ♪ (cheers and applause) MAN: Good morning!
Everybody ready for a Wing Dang Doodle this year?
♪ ♪ CAREN: When I first started to get to know Donald, I was really surprised at the way the community had embraced him, and understood him, and accepted him, and protected him.
Exactly what I want for Mickey.
Well, hi, Don darling!
How are you today?
They didn't even know that Donald had autism.
They just knew that Donald was Donald.
SID: I think the mistake people make when they first encounter Don is that there's some impairment of his intelligence.
That's absolutely not the case.
He's, he's extremely intelligent and he's perceptive, he keeps up with the world around him.
But in conversation, he's going to come at almost everything from the side.
CAREN: Do you remember, Don, what... what your... what your dad was like?
SID: He doesn't discuss feelings.
- Yeah, that's right, I remember how tall he was.
He had white hair, he was about 5'8".
SID: You get short snippets of very direct, sometimes brutally honest answers.
CAREN: What about your mom?
Can you tell me anything about your mother?
- Uh, uh, she was two inches shorter.
Donald is... Is not really chatty.
To carry on a conversation in complete sentences, he does not do.
He's not gonna chit-chat.
He'll chit-chat, but it's gonna be a short chit-chat.
He loves to be funny.
He'll say, "Hey, Celeste, I'm gonna shoot you with a rubber band on Sunday."
(piano playing) It's usually not during the service, it's sometimes before the service or after, when the preacher pronounces the benediction.
I'll get a little sting and I'll know what it is.
(piano playing) Did you shoot me with a rubber band?
- Oh, yeah.
I've already shot you.
- I didn't even see you.
It's hard not to love him.
I think it's him, not us.
(laughs) SID: Once you've been around him, it's just difficult to not want to pull for him and root for him.
And in a community like Forest, one reaction that Don evoked from the townspeople, was, yeah, Don's got some odd behaviors and some eccentricities, but he's our guy, and we don't want to see anyone take advantage of him, or manipulate him, or harm him in any way.
Donald gave me hope, but I don't know that I knew that at the time.
But I was just so drawn to him and this community.
I want to figure out how did they get it right, because they really did get it right.
As beautifully as things turned out for Donald, it wasn't that way for most people with autism in those early decades, when all the messages about autism were totally bleak and dark.
♪ ♪ NARRATOR: Children in a shell.
In a glass ball.
Cut off from the world around them.
CAREN: It's really heartbreaking, to think about how children with autism were treated back then.
Researchers treated kids like lab animals.
They were testing these crazy theories in not very ethical ways.
They ran LSD experiments on them.
They wrapped them in cold, wet sheets.
And they tested pain as a way to focus attention.
Then they came up with this really crazy idea, the Refrigerator Mother theory.
RITA: I was made to believe that I was one of those mothers, that I had caused my child's autism.
CAREN: Did you believe that it was your fault?
- Oh yeah.
RITA: When I was in college I had read Bruno Bettelheim's book.
♪ ♪ He was the authority at the time.
ANNOUNCER: "The Dick Cavett Show!"
My next guest runs a center or school for severely disturbed children at the University of Chicago and with a degree of success that his colleagues have considered miraculous.
His work with... particularly with autistic children.
RITA: Bruno Bettelheim's theory is that mothers who were cold and unfeeling were therefore unable to bond with their child.
For every child, in order to survive, one must have the feeling that somebody... you are terribly important to somebody.
CAVETT: Somebody cares.
That somebody really cares for you.
This blaming of mothers thing for autism, was not some fringe idea, it was some blip that came and went.
It was dominant for a long time in psychiatry, and it had a huge, huge and damaging impact.
NEWSREEL NARRATOR: Mother is uncertain of herself, and unduly anxious to please.
In spite of her gentleness, mother's determination to make normal contact with Margaret, is apt to drive her further and further into her autism.
Well it sounds crazy now, but it was very much the theory then.
JOHN: So that just goes to what mothers of autistic children were being told back then, which was that they had to go into therapy themselves to learn how to love their kids.
RITA: I mean that was the concept that, you know, that if you could discover what caused it, then, you know, maybe you could learn to relate better to your child.
JOHN: It was an epic gaslighting of these mothers by the psychiatric profession, and especially Bruno Bettelheim, because it turns out, he was no expert.
After his death in 1990, it came out that his doctorate was not in psychiatry, or in psychology, or anything close to that.
It was in art history.
He just had everybody fooled.
RITA: Isn't that something?
Caused an era of women who blamed themselves for their children.
And, you know, and I was an educated woman and I bought this hook, line, and sinker, it's amazing.
CAREN: So while many women got swept up in the craziness of mother blaming, there were others who began to fight for the rights of their autistic children.
MOVIE NARRATOR: The outlook for Shawn Lapin is not good.
With help, and care, and proper education, he could recover and grow into a normal adult.
But it's a long shot.
CAREN: I first met the Lapins in an old documentary John and I had found.
MOVIE NARRATOR: Take Connie and Harvey Lapin for example.
They have a seven-year-old autistic child.
They've been running since he was born looking for help for him.
HARVEY: I think the autistic child has been the most excluded child in the country.
CAREN: They told me they could remember the exact day they turned into fighters.
It was in 1971, the day they drove their son to Camarillo State Hospital to leave him there.
He was three.
It was the same thing Donald's parents had done 34 years earlier.
Can you believe we're doing this?
We took a freeway here that never even existed how many years ago?
- When we brought Shawn?
- (chuckling): 47 years ago.
(sighs) - That was the hardest drive I ever took in my life.
The only school for autism, and it's Camarillo State Hospital.
CAREN: The hospital's been converted into a college campus.
But a few of the old psych wards are still sitting there, and, and they're empty.
So do you remember the day when you... when you drove up here?
The sun was shining like today.
- We had an appointment.
- We had an appointment, and I remember walking in with Shawn, and Brad, and Harvey.
And we went right to the children's unit.
And we met the director, Dr. Rieger.
He took us around, and then he looked at us, as a family, and said, "This is the last place for your child.
Go home and figure it out."
He saw a family that he thought would be fighters, I think, a husband and wife, with resources.
(voice breaking): I'm glad it looks like (muted).
(exhales) (voice breaking): I'm just glad I didn't do it.
♪ ♪ CAREN: What was the fight that you had?
- The right to get in the door.
- The right to education.
- Get him in school.
- I can't emphasize enough-- - To give him the right to go to school.
MOVIE NARRATOR: Most schools won't even accept a child like Shawn Lapin.
- And now we'll count.
Ready, begin-- one, two, three... MOVIE NARRATOR: Shawn went through eight programs in three years.
For each one of them, his mother pounded on a dozen doors and harangued a score of administrators.
HARVEY: What it came down to, you weren't... supposedly you weren't capable to be educated.
If you have autism you're out.
- "You can't come here.
We don't, we don't deal with those kind."
It's absolutely astounding to me, that children with autism did not have the legal right to go to school back in the '60s and '70s.
And if it wasn't for the parents that got out there and fought to change that, you know, someone like my son, Mickey, wouldn't have been able to go to school.
CONNIE: Shawn became a poster child to say, "There's a thing called autism."
CAREN: They walked picket lines and they raised tons of money.
Well, we want money for research so badly, I can't begin to tell you.
Their lives are passing in front of them... CAREN: And they went to lawmakers.
- ...while they sit on waiting lists.
CAREN: And it took a long time.
But they won.
This year, for the first time, the state of California has ordered that public schools must accept autistic children.
CAREN: Over the years, they campaigned to get institutions closed... - Hold on, you don't want to fall.
CAREN: ...for research funding, and housing opportunities.
And they're still not done.
They're almost regulars at the California statehouse, still fighting for the rights of people with autism.
- I'm here still today, at my age 78, because I still have hope, and I won't stop fighting, and I'm hopeful that you will make a safety net that's realistic.
CAREN: And so Shawn, he lives with his brother Brad, and some other support staff.
- Hello, Shawn!
CAREN: And that support, it's expensive.
(people cheering) And they need to know it'll be there when they're gone.
That's why they fight.
It's love that keeps them and so many other families going.
(people cheering) You got 'em!
(cheers and applause) - He got a-- look!
He got a strike!
(cheers and applause) ♪ ♪ CAREN: Love also helps, in trying to understand that complicated question: what is autism?
What does being autistic mean?
(phone dialing out) Hi, I can't wait to see you!
MICKEY (on phone): I hope Molly can come.
CAREN: Molly is gonna come.
MICKEY: I love you.
CAREN: I love you too.
- Hello, Molly.
- Come give me a hug.
CAREN: Molly is the love of Mickey's life.
- How are you?
- I'm fine.
- What's up?
- I'm having a good time.
CAREN: They have this extraordinarily beautiful relationship.
And she gets how Mickey has his own way of thinking.
- Wait, can you show me your apartment?
- Oh... my God!
(laughs) That's a lot of stuffed animals.
- Do you have your keys?
- Or is it open?
- It's open.
- (laughing): Oh my God!
Did you get more than last time?
- I'm trying to find the animal I named after you.
This is the one I named after you, Molly.
- That's so cute, what kind is it?
- It's a cat.
- How do you sleep here?
- I love it.
- Wait, how did you even collect all these?
Do you buy these yourself?
- Yes with joy joy.
- With what money?
- My own.
Safe to pet?
- (laughs) What is this?
♪ ♪ CAREN: Now about these animals, they all belong to a system.
In Mickey's mind that is.
Mickey gives each animal a number.
Like this one is number seven.
Which he then connects with the periodic table, where the seventh element is nitrogen.
But seven is also a number he assigns to his sister, Molly.
And Molly also gets a song to go with her name and number, "Old MacDonald."
Or this animal, he's given it the number 46.
Element on the table, palladium.
Person with the number, Liz, his friend.
And she gets an Irish ballad for her song, "Star of the County Down."
And on it goes, animal, number, element, person, song.
Animal, number, element, person, song.
He's got thousands of these connections going on in his head, and they're all organized, all the time.
And maybe nobody else gets it, but he does.
Autism is a little different.
Your brain works a lot differently than most people.
We don't like change.
We don't like the unexpected.
It's not always easy for me to relate to other people.
You have to learn things intellectually that other people know intuitively.
When a layperson asks me, um, "What is autism?"
like my response is it's a developmental disorder that impacts communication and social skills.
Obviously there's more to it than that.
When I'm asked to go a little further, and I say well, for example, people on the spectrum tend to be very concrete.
So if you use subjective language, if you use metaphor, if you use simile, they may not really understand what you're trying to say.
- Tell them about the episode where our mother suggested it to you that drink six glasses of water a day.
You remember that?
DONALD: Yes I remember that.
OLIVER: Well, what did you do?
I got six glasses, and lined them up and filled them with water, and I drank one by one, each one of them.
- Mother came in there and said, "Don, what are you doing?"
And Don's response to her was, "Well, you told me to drink six glasses (laughing): of water a day, that's what I'm doing."
- Ah, right.
I was diagnosed in my early 40s as an adult, and I was diagnosed with Asperger's syndrome.
Can I take a picture of you on that stump over there?
VALERIE: The core characteristics of autism include social and communication differences.
- All right, put your arms out.
VALERIE: As well as what we call in the diagnostic literature repeated and restricted interests.
- Question: when we were talking about autism and then you were talking about Julia, from "Sesame Street," can you tell me a little bit about her?
- She was the first character to have autism.
- On "Sesame Street"?
May I see your painting, Julia?
- Sometimes it takes Julia a while to answer.
It helps to ask again.
- Can Big Bird see your painting?
- See your painting?
- Do you see any similarities between you and Julia?
- Because we both have a similar way... - Of what?
- Of, of communicating.
- How many languages can you say the word cat in?
- In Russian, koshka.
It's the same in Italian as well.
VALERIE: I like to call repeated and restricted interests, deep and focused interests.
(chuckles) Um, and I like that because that it describes my experience and the experience of others in a less clinical way.
- Gato, that's Portuguese.
- We have seven names we can say cats in?
♪ ♪ (marching band playing) JOHN: When Caren and I were trying to figure out why Forest was so accepting of Donald in an era when acceptance like that was so rare, you know, and kids like him, you know, didn't get to go school, we found a really important fact-- he did get to go to school, in this little town in Mississippi And, in fact, that's where this whole generation of people in his community, first got to know him.
JOBYNA: I've known Don since he was... six years old.
My first memories would start in the second grade.
JOHN: And we learned that it was his mother, Mary Triplett, who got him in.
She reached out personally to the principal of the local elementary school.
- I would bet that they could, you know, probably hear the desperation in her voice and realized that, you know, she, she really wanted this to happen.
JOHN: She more or less insisted that they take her son there.
And what that at least partly reflects, we think, is the clout that the family Triplett had in the small town of Forest.
Because they stood at the top of the social hierarchy there.
SID: Don's father was one of the pillars of the community.
The other thing is his family had resources.
- You know, they could-- - Good resources.
CAREN: So as I learned more about Donald's happy life, I began to see that his story had a lot to do with who his family was, and that they had money, and influence.
But, the reality is, so many families will never have those advantages.
JASON: I think my story is just the average story.
You know, a single parent raising a kid.
You know, I just happen to be a man, a single daddy raising his son who happens to be autistic.
You know, it was just... he was in a bad situation, you know, when he... Before I got custody of him at 18 months old.
Wasn't being taken care of properly, that kind of stuff.
Mom was on drugs, all that.
- What's up.
- You waiting on the van?
- You going to school?
- Gonna have fun?
- When I say severely autistic, I mean my son requires around-the-clock care because most things he can't be left to do on his own, because if he is, it ain't going to get done.
I have to wash him up in the bathtub, because if I try to leave him alone to do it, he won't do it, and he's also epileptic, so he can't be left alone in the bathtub.
- Have... have a good day.
- All right.
- See ya!
Even going to the bathroom, I have to be there.
I have to guide him through going to the bathroom, even though he knows how to do it.
If I don't go with him, he won't go.
Or he'll go on the floor, or he'll go in the sink, or he'll wipe it all over the bathroom, or something like that.
CAREN: Do you get any kind of support from anybody?
- Not really.
Not really, it's just, it's just me.
CAREN: I know you've told me that you're not working.
JASON: I was a painter, I was painting the different apartments, like when people move out, I would go in, clean the apartment, paint it, get it ready for the next tenants.
But when my son started having seizures, that meant me not showing up for work for two days.
So I lost the painting job.
Then I got a job cleaning offices down the street.
But then I couldn't even do that (chuckling): because I kept getting calls from school.
He's hitting the staff, or he's scratching the staff.
He's drawing blood, you have to come get him, he's a danger.
- (indistinct) CAREN: Sheamus is one of those kids that has the kind of autism that the public rarely gets to see.
And that really isolates families, especially families that don't have money and support.
- Wanna meet somebody?
- Okay, that's Caren.
Wanna say hi?
(Jason chuckles) Hi Caren.
- Come on.
(Jason laughs) - Can I shake your hand?
- Nice to meet you.
CAREN: I learned about him because his dad found his way around the isolation part.
He tweets, all the time, about his life with Sheamus.
JASON: I went to Twitter, and I said, "Well, this is gonna be where "I'm gonna speak how I wanna speak about autism.
"I am gonna tell what my son does every day.
I'm gonna tell what I do every day."
And if people don't like it, they can unfollow or leave me alone.
Don't gotta be bothered.
You know, I'm gonna name it Autism Hood, 'cause it's a hood of autism, where people can come, congregate, talk about things, complain about things, cry about things, rejoice about things.
And if you're having a bad day, we can have bad days together, or we're having good days together, we can do that.
Talk about our kids, anything, you know?
Just keep it positive, pretty much.
Like if my son woke up one morning, and decided to just run through the house naked until it was time to go to school, (chuckling): then I would tweet that out, because that's what actually happened.
But then somewhere in Twitter-land, it happens somewhere else, and they read it, and they were like, "Oh my God, the same thing happened, "thank you for writing that, "'cause I didn't wanna write that."
(clippers buzzing) I think the biggest thing that social media does for special needs parents is makes them feel like they're not alone, you're not isolated.
That's how you cut hair.
(chuckles) How you like it, Bo?
JASON (voiceover): Well, if I'm not here to do this constant assistance and help, then who is gonna be here to do that?
I think if I'm not here to do it, he's just not gonna get it.
Nobody's gonna do what I do.
And I honestly believe that.
Nobody in my life that I know is gonna take over, and do every single thing the way I do it, every single day.
They're just not, 'cause they're not invested in my son like I am.
And that's the reality of it, you know?
If I was to suddenly pass away, I'm pretty sure he wouldn't understand what happened.
CAREN: So you just can't die?
Just gotta be immortal, you know.
Gotta get some robot parts and all that kind of stuff.
Ready to say bye?
- Say bye-bye.
(phone dialing out) CAREN: Mickster!
MICKEY (on phone): Meow!
CAREN: How are you, baby?
Do you know what cats like to wish me?
A meowie Christmas.
CAREN: Mickey is totally into cats.
CAREN: He meows a lot.
- Meow meow meow meow meow meow meow.
And he purrs a lot, and he'll tell you that he's purrfect.
How do you say cat in Dutch?
How do you say cat in Castilian?
How do you say cat in Swedish?
SIRI: I can't translate into Swedish yet.
I wanted Mickey to have a kitten 'cause I felt that he was lonely.
- ♪ Here kitty, kitty, kitty ♪ CAREN: Mickey and I talked about getting a kitten for probably almost a year.
(on phone): How are you feeling about the cat kitten thing?
- I'm feeling fine, right meow.
(cat meows) KEN: If you decide that you do want to adopt, you almost have to get to a point where you hold them, because they'll come to you for... - I'd rather pet them and not adopt them.
- That's okay.
That's perfectly fine.
CAREN (on phone): How are you feeling about getting a cat?
- A little bit nervous.
CAREN: A little bit nervous?
Do you not wanna get one?
- I don't know...
I don't know if I wanna get one.
CAREN: All right.
You know, you don't have to get one if you don't want one.
CAREN: But I really thought it might be something that made him happy.
So as part of the transition program that Mickey was in, a whole bunch of students and Mickey went to this animal shelter, to feed these preemie kittens and to play with kittens, and I thought this was like sort of the perfect opportunity.
- ♪ Here kitty, kitty, kitty.
♪ (fake cough) I'm allergic to kittens.
CAREN: I'm trying to get Mickey to hold the kittens, and like telling him how cute they are, and you could see Mickey's face.
It's like a stuffed animal.
Do you wanna bottle feed it?
- I'm allergic to this cat.
CAREN: And I go to give Mickey a kitten, and I know this is it.
Just sit down.
- I'm a little bit nervous.
- I know.
Just sit down right here.
- Don't give the cat to me.
- I'm not giving the cat to you.
And he looks at me and he says... - I think baby kittens are disgusting.
And that was it.
No more kitten.
I think he's probably afraid of the kittens.
- I don't know what that kitty's name is.
CAREN: Animals kind of scare him because they're unpredictable.
And people with autism like predictability.
So it would make sense that he would like a stuffed animal that he knows exactly what it's gonna do and when it's gonna do it, which is nothing, to a real animal.
I love these animals, they're my friends, my stuffed animal friends.
I just felt badly for him.
Because I can't give him someone to snuggle, to be his companion.
It was never about him wanting to own a cat.
- I'm excited.
Mama pull her tail.
(laughs) CAREN: I don't pull tails.
- We went through this, this morning, Mickey.
Does she pull tails?
- Tails are not for pulling.
(all laugh) CAREN: Mickey discovered a way he could relate to people.
("Meow Mix Jingle" playing on cell phone) (chuckling) CAREN: For someone like Mickey, who has a hard time connecting to people, his cat patter, it's, it's his way in.
- (on phone): ...out the window, meow, meow, meow, meow, meow meow, meow, meow.
♪ ♪ JOBYNA: I think in certain areas, he's a genius.
You could give him... complicated numbers, you know, like 317 plus 109 and 10, all of that, like a list of three, and he'd sit there a few minutes, (clicks tongue) give you that number.
- He could multiply them.
Four-digit numbers... - Yeah.
- By four-digit numbers.
You remember the movie "Rain Man"?
And, and the toothpicks?
(clattering) - Can I have the check?
Sorry about the toothpicks.
- 82, 82, 82.
It's a lot more than 82 toothpicks, Ray.
But... 246 total.
(clicks tongue) How many toothpicks are there?
- Um... 250.
- Pretty close.
Come on, let's go, Ray.
- There's four left in the box.
- (distantly): I have to get my backpack...
When I saw that movie, I thought, "Gosh, that's Donald Gray, up one side and down the other."
CAREN: You know, the first time I saw the movie "Rain Man," Mickey hadn't even been born.
I didn't know anything about autism.
I just knew that this film was a stunning look inside the mind of someone with autism.
I had no idea that portrayal would lead to misconceptions about autistic people, especially that toothpick scene.
What happens in that scene is not typical of most people with autism, but because there were no other characters portrayed by Hollywood or television around that time, other than Raymond and his toothpick counting, that's what a lot of people assumed autism looked like in everybody.
Of course I'm an excellent driver.
JOHN (voiceover): And also that people with autism, like Raymond in the movie, were not capable of living independent lives.
But that's no longer the way autism is seen today, because the definition has changed so much since then.
It's become broader, and we have the autism spectrum.
We have a lot of people getting diagnosed today who would not have in the past, and that includes people who are getting diagnosed as adults.
ROBISON: I was 40 when I learned about this autism thing.
And at first I was shocked, because I-- all I knew of autistic people was they, they didn't talk.
CAREN: I've known John Robison for a really long time, and we're friends.
And I remember one of the first things he ever told me was this amazing story about his experiences working with bands like Pink Floyd and Kiss.
ROBISON: One of the things that I'm very proud of is the equipment that I made, it did its job.
It, it played music, it exploded, it lit up.
(electric guitar blaring) The musicians were always welcoming to me.
For a person, you know, who'd been rejected all his life, people calling me names and stuff, nobody ever called me names except in a complimentary way in music.
I mean they might have said, "Wow," you know, "Ampie," because they called me Ampie, because I made the amplifiers.
You know, and Ampie, they might say, you know, "He's crazy," or "He's like a real freak," but he was like a brilliant freak.
♪ ♪ I have many gifts, I suppose, as a result of being different.
But I also have disabilities.
I wasn't very good, and I'm still not very good, at reading emotional cues.
A lot of times I would... say a wrong thing, and I would have no clue what I did wrong.
I just thought that I was like a second-rate person.
But I have been really lucky in my life, because... first, when I was, you know, in my early 20s, I was able to engineer musical things that would sing for the world.
So I didn't have to find a way into a conversation.
And I took up fixing cars, and people would come to talk to me about the cars.
And then I began writing about autism, and people talked to me about that.
But in every case, the work that I created spoke for me.
And for me, that's how I have overcome the disability of not being able to figure out what to say.
I don't figure it out, other people say things to me.
(applause) CAREN: John's lived an extraordinary life.
- Thank you all for joining me here today.
CAREN: He speaks all over the country.
His goal is to inspire people with autism to have pride in themselves, to see autism as part of their identity.
- How we talk about neurodiversity.
It's us folks.
Neurodiversity is the idea that some amount of neurological diversity is a normal, healthy part of humanity.
Neurodiversity is our word for what we are and our word is not a word of disability.
Our word is a word of empowerment.
(cheers and applause) CAREN: Today, the dominant picture the public gets of autism is through characters like Max from "Parenthood."
- Some people say that having Asperger's can sometimes be a bad thing, but I'm glad I have it, because I think it's my greatest strength.
CAREN: Or "The Good Doctor"-- a guy who has challenges, but is also unbelievably brilliant.
- Check valve.
♪ ♪ CAREN: But there's a problem with this uplifting picture.
It's who tends to get left out of the story.
There are a whole lot of people like John Robison who can speak for themselves, and that's fantastic, but there's a whole lot of people on the other end of the spectrum who can't.
It's the warm and fuzzy view of autism.
These are the stories that make people feel good.
(young Jonah crying) WOMAN: Don't hit me!
I don't like it when you hit me.
AMY: No one wants to hear about the autistic person that attacked his mother or smashed his head against the floor.
Like that's a really disturbing story, and no one wants to hear it.
(young Jonah crying) - Don't hit me!
I don't like... AMY: When I look back on those years that Jonah was aggressive, I don't know how he got through it.
These rages would come over him, multiple times a day often.
And I mean, they never lasted very long, but, you know, 15 minutes of your kid, um, you know, trying to rip your hair out or bite you or kick you is... is a long time when it's happening.
♪ ♪ CAREN: Amy Lutz has been raising a son with autism for almost as long as I have.
But they're profoundly different young men.
♪ ♪ AMY: Jonah loves to spin.
He turns on some "Sesame Street" music, and he starts flying around the room.
♪ ♪ He looks like Scott Hamilton on ice skates sometimes.
CAREN: Jonah has a family that completely loves and supports him.
They really get him.
And they get that he has something to say, like his "Sesame Street" drawings.
There's always a lot of... some movement in Jonah's art.
CAREN: When you put them together, you can see that he's creating this motion, like a cartoon.
When he is through with his series, he will crumple it up and just throw it in the trash can.
Because art is all about process for Jonah, not about product.
♪ ♪ AMY: You know, I can describe Jonah and talk about his struggles for the rest of my life, and I'm sure I will be doing that.
All right, Jonah, number two is?
- Can I help you with your socks?
(voiceover): I don't believe that Jonah has a real conception of what it would mean to leave home, and what it means to have a job, and... You know, these are really abstract concepts, and Jonah does not have abstract concepts.
I'll do the socks, you do the shoes.
(voiceover): He has no safety awareness.
And if you notice, we have these... (buttons clicking) ...code locks on all our exterior doors, that we had to install to prevent Jonah from wandering.
(voiceover): When Jonah was younger, he would find a way to slip out.
Some... you know, he'd get out the front door, he dropped out of some windows.
And several times we found him walking down this busy road on his iPad, you know, with, you know, traffic stopped on either side, while somebody tried to coax him out of the road, and somebody else called the police.
Those of us who live with autism, you know, in its more severe forms, we don't think of it as a gift.
It's incredibly disabling.
(struggling) MAN: You want some help?
- WOMAN: Up-up-up-up... AMY: I've seen kids who have to wear helmets and arm stays, to keep them from bending their arms, because as soon as you release them, they punch themselves in the face, hundreds of times an hour, until they detach their own retinas.
You know, I've seen... autistic teenagers that still have to wear diapers.
Kids that have no language at all.
And I think that's an incredibly important distinction to make.
That when... when your neurodiversity starts to really restrict your opportunities in the world, that's not an identity, that is a pathology.
And if everybody could accept this idea, that at some point neurodiversity shades into pathology, and we don't even have to have a huge argument about where exactly that point is.
I think it's about how much it impacts your functioning in the world.
(on-screen): Ready to get the princess some steak?
- (Jonah laughing) - What's that?
- Did you get the princess some steak?
(voiceover): I would love not to have to talk about Jonah's previous aggression.
I would love not to have to talk about his, you know, his cognitive impairments.
(on-screen): Oh, sorry, excuse us.
(voiceover): But I do that, because it's critical that those with the most profound needs are central to any conversation about policy, about stigma, about autism writ large.
I think the spectrum is enormously broad.
And so everyone who can speak for themselves should speak for themselves.
And if people think I'm somehow subverting her thoughts or wishes or desires, then I would just say I'm doing the best job that I can.
I would love that if Slade could speak for himself.
I hope he can.
But until he does, I am definitely his protector and his facilitator, to help him navigate life.
(Slade vocalizing) I think autism now is a meaningless diagnosis, simply because the range of people who... (on-screen): Excuse us, sorry.
- Excuse us, excuse me.
(voiceover): ...Who carry that diagnosis is impossibly broad, to the point that you don't know anything about a person by hearing that that person's been diagnosed with autism.
(on-screen): Over here.
Stay with Mommy and Daddy, please.
You know, researchers are starting to talk about "The Autisms."
You know, that Jonah's autism is not the same as John Robison's autism.
And that, it's not useful to think of them as the same.
(doorbell chimes) You know, we love this place, because not only does Sarah give Jonah a great haircut every time, but they don't mind if he lies down on the floor or if he starts spinning.
And they're totally cool with it.
They really welcome Jonah into their shop, and we're so happy to bring them our business.
CAREN: What did you think about the people who were coming in for haircuts, how they treated Jonah?
I mean, that's kind of what I'm seeing a lot now these days, is that people are nice.
(on-screen): Excuse us, sorry.
No, go ahead.
(voiceover): You know, often people will stop and say he's great, or... "I know someone with autism, is he autistic?"
They really accept him there, they welcome him there, and it's why we keep going back.
ROB RESNIK: People might see the disability, and when you're a parent or when you're around them all the time, you just see their personality.
And his is just so pleasant and sweet that, you know, he's just a great guy.
- (humming) - He's a great worker.
He's great around the house.
And people may not see that, and they may see our situation as difficult if they really didn't know what he was like.
- (humming) (chuckling): Like that.
(laughs) - (muffled speaking) ♪ ♪ You've been traveling a long time.
CAREN: So the first diagnosed child, he's in his ninth decade of life now.
- November of 1989, that's... when I went to Australia.
CAREN: And he's doing things that nobody would have ever expected.
- So this is 30 years of travel in these passports.
- Yeah, it sure is.
I get a picture from Germany or Iceland or Florida, (chuckling): Wherever he goes, you know.
And I often wonder, how in the world does he make it alone?
You know, I don't like to travel alone.
(laughs) He liked playing golf.
- Oh gosh!
Yeah, he did.
Snow on the ground, if it's hailing, he's out there on the golf course.
Don has a really unique... waggle and swing, and if you've ever watched him go through the motions of that, it's, it's difficult to take your eyes away.
WOMAN: Great job.
MAN: All right, right down-- he's the only one to hit it down the middle.
(Donald chuckling) WOMAN: All right.
MAN: Good shot, D.T.
CAREN: You know, I think back to this little boy who was put in an institution in the 1930s... (group exclaiming) CAREN: He's just come so far.
(indistinct chatter) And he really has it all.
But Donald is sort of an outlier.
DONALD: Oh, thank you.
SID: Obviously, the whole discussion begs the question of, if there had not been the respect for Mr. Beamon Triplett that the community had, if there had not been the network of support, all of those things, would Don's life have turned out the same way?
JOHN: So there's another important factor about the environment that Donald grew up in.
He was a white child raised in the Jim Crow South.
And Forest was a segregated community.
Separate facilities and all that.
Of course, a lot has changed since then, but there's no doubt that a child who was Black growing up when Donald was a kid would have had nothing like his advantages, even to getting diagnosed.
And it's not just the South.
For Black children, getting diagnosed with autism has always been a challenge.
When Caren and I started looking at old documentaries about autism, we noticed that almost all of the kids were white, and that's partly because for a long time, psychiatry believed that autistic children were only born to parents who were highly educated and highly intelligent.
MOVIE NARRATOR: His father is a specialist in nuclear power plants.
JOHN: And the categories of highly intelligent and highly professional, because of racist attitudes, were seen to rule out Black families.
MOVIE NARRATOR: His father is a college graduate and a self-employed businessman.
JOHN: So for autistic children who were Black, getting an autism diagnosis, was much more challenging than for white kids.
And, in fact, it still is.
STEPHANIE PARKS: For me it looks a little dead obvious, like, well, of course a Black child couldn't have it because our ideas tied to autism are always, "Oh the savant, the genius, the card-counter."
And when, in the United States, we... you know, really stereotype Black people as being less than, less intelligent, less capable.
If you have a diagnosis that surrounds intelligence and high intelligence, right, of course, our children are precluded from the diagnosis.
That's pretty obvious.
Come on, you wanna make this light or no?
Go, go, go, come on, come on.
- Come on, come on.
Come on, come on, come on... - Go, go, go.
(voiceover): My academic work stems directly from my own experience being a mother of a child with autism.
I used to sit in our clinic during my son's therapies, and wonder why we were one of the only Black families there.
And that started a question that necessitated answers for me, and that meant taking my degree all the way to UCLA to get a PhD, to answer it.
He was happy in my stomach, he was happy once he showed up.
He didn't cry when he was born, he just snuggled right in and got on with business.
And he smiled, and he was the happiest, fattest, most beautiful chocolate baby.
- Um... - Peanut butter chocolate.
- Okay, listen.
There is Coke over there, there's water bottles... CAREN: I got to know Stephanie Parks through her research.
- Mom will help with Coke... CAREN (voiceover): She's studying how children of color are diagnosed with autism.
STEPHANIE: For families, we find a lot-- especially Black families-- a lot of our problem with autism exists in the systems and the people that we come up against.
- Dell Parks!
Look who I found!
- Miss Laura!
Go get her.
- Hey, high five.
How you doing?
STEPHANIE: I couldn't get access to a diagnosis.
I knew to the core of my soul that he had autism.
We had a three-year-old that was still in diapers, was completely un-potty trained, completely nonverbal, tantruming for hours on end.
We had all kinds of markers.
He was lining up toys in absolute grids across our floor.
He was flapping, he was toe-walking.
I mean we had every red flag possible.
And we still couldn't manage to get a diagnosis.
We went to the pediatrician several times, and we got the same type of response that most families get, especially Black families, which is our boys are... "They're a little slow, "he's slower than other kids maybe," you know, "He'll catch up."
And actually the pediatrician was my personal pediatrician when I was growing up.
I mean, she's warm and lovely, and... - Mm-hmm, yep.
- All the things you would want in a pediatrician.
- Like really exceptional human.
That's just how baked-in racism is into the system, that it's uncontrollable, even from... people that we really love and trust.
♪ ♪ VALERIE: This doesn't mean that there are fewer African-American and Hispanic children with autism, let alone adults.
(chuckles) But it does perhaps indicate that there are large numbers of people in the population who are being misdiagnosed with other conditions or not diagnosed at all.
When I began my research, I was thoroughly shocked by how racism worked in clinical spaces.
- Making a pizza!
You got it!
STEPHANIE: I have spent time watching clinicians diagnose kids with autism.
In one particular situation, I was watching a clinic in a major metropolitan area.
And one of the Black parents was asked about disciplinary practices.
And to which she used the word "whuppin'."
She explained to the clinician how her child was doing things that had scared her, like climbing into high places and running off, and like if he did that, he would get a whuppin' so he would understand not to do them again.
And the clinicians became very concerned, and they wanted to call Child Protective Services.
But the next appointment, we had a white family come in, and the child expressed having been hit by their parents in response to being naughty.
And the clinicians didn't have the same response to the mother in that situation.
In the situation of the white family, the clinicians framed her as being emotionally unavailable and needed help with resources, such as respite care, you know, somebody to come in and give her a break and take care of the child while mom caught a break and refreshed herself.
And white clinicians looking at a Black mother using the word "whuppin'" necessitates a call to Child Protective Services, but a white child expressing having been spanked does not.
The framework for doing the autism diagnostic test itself is based on how white people understand behavior and language.
And being self-reflexive, I know the things that I'm saying are hard to hear, they're hard to say, they're scary for me too.
I take my kid to these clinics.
And I genuinely appreciate, love, and respect the clinicians.
But we have to be extremely careful, because racism is so quiet, and so insidious, that we have to be capable of talking about that, and being very, very real about the fact that it's happening and we're having these ideas about people who are not like us.
JOHN: How vulnerable is he out there in the world?
WENDELL: In general, you know, he still faces the same challenges as any other Black male.
STEPHANIE: In my research study, every Black family that I've met with has asked a similar question: "How do we keep "our children safe?
"How do we fix this situation so that our children won't die?"
That is something really to think about, is that Black parents of kids like Dell, kids with autism, we can do everything in the world.
We can do all the therapy, we can have the most brilliant child, we can do all the right things, but I can't keep my son safe.
And that is, I think, one of the things that just absolutely scares the hell out of us.
(phone dialing out) CAREN (on phone): Hey, baby.
MICKEY (on phone): Hello, Mom.
CAREN: So, are you working?
Where are you working today?
MICKEY: I'm working at the senior center.
CAREN: Oh, cool.
- For those who are shy of being filmed, you can just turn your faces away from the camera, so that way you'll be participating.
CAREN: Mickey had this great job volunteering at a senior center, calling Bingo.
He's had a lot of jobs over the years, both volunteer and even paid jobs, but he really loved this one because it kind of played to his strengths.
- B 14.
That's the letters in Abner Doubleday's name, 14 letters.
O sesenta y cinco.
Five baker's dozens.
O sesenta y nueve.
Kids, don't think of that number.
(laughter) CAREN: But like many people with autism, Mickey has a lot of sensory issues that can really put him into emotional overload.
Crying is one of those things for him.
So when he was working at the senior center, some of the older residents with dementia would cry.
It completely derailed him.
WOMAN: This is Lila.
CAREN: So even a job that he really enjoyed, he couldn't manage.
MICKEY: Here today, dead tomorrows.
CAREN: That's happened a bunch of times now.
So look at that programming block.
Yep, there you go.
- ... on the right one.
- Yeah, there you go.
You got it.
- You got it.
CAREN: He's been successful in employment training programs, and has the skills to do the work, but he still really struggles with so many intangibles.
MICKEY: Got it.
PETE: I tend to think employment is more than about... what you actually do as the production part of your job.
The following items: color sensor, ultrasonic sensor... PETE: Working as part of a team, getting along with others, like, using the bathroom there and not making a mess, like buying your lunch at the cafeteria, not talking about things that people don't want to talk about.
- I like Pokémon.
- You do?
PETE: Those are what make or break a job.
CAREN: This isn't just a Mickey thing.
It's a lot of really capable people who are being overlooked.
I think the challenge are all those soft skills that go around employment.
And those are all sort of bidirectional skills, so that's why I always say, it's almost always the, the other end of the equation, the typical people he works with, that are gonna need as much training as Mickey does.
(buzzing) The last time I had like another traditional job was this summer.
I worked at an autism school, watching autistic kids.
But, like, I didn't engage with the kids very well.
And I needed, like, really frequent breaks because of, like, the sensory stuff.
And I would get overwhelmed, so... Yeah, I got fired.
(chuckles) I've gotten fired a lot.
♪ ♪ CAREN: Donald had a job.
He had a job for life.
See you Monday, Gail.
CAREN: That bank he visits every afternoon?
- See you Monday, Jessica.
CAREN: He worked there.
- J.P. CAREN: And it was like a second home to him.
- All right, Jennester.
- See you later, darling.
- All right.
CAREN: It's a place where a whole new generation of people got connected to him.
- See you later, big Debbie.
♪ ♪ WOMAN: He was a teller, in his early years.
And then he worked in bookkeeping, he would stuff statements.
CAREN: The fact is that Donald's family owned the bank, and that made a huge difference.
It meant everyone was committed to his success, and whenever a new manager came in, a member of the family would ensure that.
GENE WALKER: Bill McCravey, who would have been Don's uncle.
That would be Don's mother's brother.
Early on, he kind of explained Don's situation, and he made the statement to me, "Gene, I always will appreciate you if you'll have a place for Don."
And, you know, I always did.
He was given the opportunity to make mistakes, and then try something else until there was the right fit.
And, in society, you don't get to do that.
So Donald was afforded the chance to be successful, and he was successful.
♪ ♪ And that would be perfect for everyone on the spectrum, but there just aren't enough situations like that.
At least not yet.
♪ ♪ I'm excited for Mom and Molly to come.
Where could they be?
Are they far or near?
There they are.
And that's them!
Mom and Molly.
♪ ♪ MOLLY: Hi!
- Hello, Mols.
- How are you?
- I'm fine.
- Hey Mickey!
- Hi, honey.
- How are you?
- Mickey, you look... What is that?
Where's the beard?
- So-- so, maybe-- so I was trying to look forward to go into Saheed's.
- That's the name of the barber.
- That's the barber.
CAREN: Who's graduating today?
MICKEY: I am.
- That's not right.
MOLLY: Sara or Zara?
- I'll surprise you.
- This is his new jacket that he bought.
- It looks like... - At least, it looks like one.
- Mickey, there's a hanger on it.
(rustling, crinkling) - Lolli, lollipop, from Zara.
- (chuckling) I love this wrap.
I'm a cat.
Meow, check me-owt.
I'm a cat.
Meow, check me-owt.
Just know that there's gonna be a lot of people here, right?
CAREN: Mickey was taking life skill classes at the local community college with students from his First Place program.
MAN: Any other questions?
CAREN: And they were invited to be part of the spring commencement.
WOMAN: Today is the big day, guys.
("Pomp and Circumstance" playing) ♪ ♪ CAREN: We were really looking forward to Mickey's graduation.
He really worked so hard to get there.
♪ ♪ I was so proud of him.
MICKEY: Too many people.
I felt a little bit overwhelmed.
When is it gonna end, this graduation ceremony?
CAREN: Graduation day was incredibly painful for Mickey.
(applause, "Pomp and Circumstance" continues) MAN: Michael Goodrich McGuinness.
(applause) CAREN: You know, it was really hard to watch him struggle so much.
MICKEY: I can't sit there anymore.
- What's wrong?
- My head is hurting.
- Your head is hurting?
- Can you just not sit there anymore?
- I can't sit there anymore.
- Well, it's almost over, right?
- Yes, yes.
(applause) - You don't look very happy.
- Because I was-- I was overwhelmed.
- All right, but now you're okay?
- A little bit.
(loud cheering) - So, see if you can stick it out, because at the end you get to throw up your hat.
- Can you try?
- I don't know.
(cheering) - What?
- I don't know.
I'm here if you need me.
♪ ♪ (applause) MAN: Let me show you the program.
See where we're at?
- We're right here.
- That's all it gets.
I don't wanna wear a stupid gown anyways.
- MOLLY: Mickey, Mickey, come on.
It's almost time.
(cheers and applause) - I'm choosing not to wear a stupid gown anyways.
(announcer speaking) (cheers and applause) - What don't you like about graduation?
- It's too long.
- Too long, what else?
Maybe... too what?
Too many what?
- Too many people.
- Too many people.
- So if I-- so if there's another graduation, I won't attend it.
- I didn't want to wear a silly cap and gown.
- Well, I have a graduation in May.
Maybe you'll come or no?
- So maybe try not to.
- You'll try not to come, okay.
- That's okay with me.
Can I send you a picture of me in my cap and gown?
CAREN: You know, I really didn't know what was the right thing to do.
I could have just let it go, but I thought it was really important.
(on-screen): You did great.
- You stuck it out.
- I'm proud of you.
- All right?
- I love you.
- Love you.
CAREN: Like any other parent, I wanted him to know that he could get through things that are hard to get through.
But as Mickey always does, he teaches me what's important to him.
(on-screen): What'd you do with your... your gown?
- I threw it out.
CAREN: And graduations just don't have meaning for him.
He doesn't need that external validation.
MICKEY: Let's get ice cream first.
CAREN: Okay, we'll get ice cream.
♪ ♪ MARTHA: Well, there we are, seniors of '53.
JOBYNA: There you are.
This is Martha, that's me.
- Oh yeah, let's see.
"Don, you have much ability, and in the past you have put it to good use."
Mine has like, "To a wonderful classmate, all the luck in the world to you."
That's what I wrote.
But I can't read the rest of it... - (laughs) - Because it's faded.
- Now that's Donald Gray.
I just love this-- "I wish myself luck."
(laughs) - Yeah.
Isn't that good?
- That's what Don wrote to himself.
- "I wish myself..." - "I wish myself luck.
- (laughing): I just adore that.
CAREN: Donald really did get lucky.
For a lot of people on the spectrum, school is the most painful time for friendship.
I was just different, and... they just didn't understand that.
I was beat up, people said mean things to me.
I think that there is a specialness to the bullying that children on the autism spectrum experience, because we don't always know that we're being bullied.
CAREN: Amy Gravino is this really cool person, and she speaks honestly and openly about her experience as a woman with autism.
And I decided that he was the one I was gonna lose my virginity to... CAREN: And she's known best for her talks on sex and autism.
And I thought, well, you know, when you stay in a hotel, or you eat at a restaurant, sometimes they have these cards you can fill out to say what your experience was like... CAREN: And she tells this one really funny story about what she did the morning after she lost her virginity.
So I created a sexual intercourse comment card.
(group laughs) And... (laughter continues) These were the questions on the back, so it's a little hard to read all of them.
So, "What did you enjoy most about this sex session?
"What did you think could have been better?
"What happened that you would like to have happen again?
"Please rate the following from one to five: the outfit I had on, my facial expression..." (voiceover): If you were to look at photographs of me growing up, you would, for a while, you'd see a very happy little girl.
You'd see a girl with out of control curly hair, and then a girl who gradually, by the time she was around 12, 13, stopped smiling.
Even though I was diagnosed at the age of 11, the word autism didn't really mean anything at that point.
I only knew that I was different and that different was bad.
That was the response that I received from my peers.
"You're weird, you're a freak, you're a retard, you're a loser, you're ugly."
These were the things that I heard on a daily basis.
And what ended up happening was that the voices of my peers became the voice in my own head.
But all of the-- all of my feelings about myself at that point were things that I didn't like.
I couldn't... (sniffles) I couldn't point out things that I did like.
And there wasn't a whole person there.
And... And I wanted to die, because I couldn't think of another way out.
My mother says that I came home from school one day, took off my backpack, and said, "I feel like killing myself."
♪ ♪ It was so bad that, you know, I would come home from school every day crying.
Yeah, I mean, I kind of block it out.
♪ ♪ GRAVINO: I remember the people who stood up for me.
(on-screen, laughing): Here, hey!
Stand up for someone who can't stand up for themselves.
You know, lift them, instead of putting them under your foot.
So you may think that, like, what you're saying may not make a difference, in... to this person, but believe me it makes all the difference in the world, and they will carry that with them for the rest of their lives.
Hi guys, my name is Benny, and this is my friend Jensen.
So we will be doing a prank on Jensen today.
CAREN: Benny and Jensen showed me an example of friendship the way it can be.
One of them is on the spectrum, the other isn't.
- Now you're stuck.
(both laughing) - That's how you do the water bottle prank.
Let's do it again.
DANNY: Benny and Jensen met really early on in the pre-school.
- (laughing): Wow!
We don't separate kids with autism from typically developing kids.
They're fully and intentionally integrated together.
(kids singing indistinctly) Most bikes have one seat, right?
But if you have a bike with two seats, you actually create opportunities there, to facilitate that interaction.
And that's not an accident, right?
Our lunch boxes are already put out on the table, so kids find their lunchbox and sit down.
What that allows us to do is make sure that every child with autism has a typically developing child on each side of them.
Here comes Sam.
(voiceover): So it becomes more about the activity than it does about who does and doesn't have autism.
(kids playing) We're not looking for typically developing kids to charitably be nice to our kids.
We want them to see the value that kids with autism bring to the relationship.
And that's what's really special about Benny and Jensen.
They've been graduated from our school for two years, but have remained friends.
Benny's mom found this letter in her son's backpack and came in and shared it with me.
And it's kind of an "I'm thankful" letter.
So it says, "Dear blank," and he fills in Jensen, so "Dear Jensen."
And it says, "I am thankful for you because when I was feeling..." and he filled in the word "scared," "You made me feel unscared "by playing with me at your birthday.
"Thank you for always being my best friend "forever and ever and ever.
From, your friend Benny."
And what's so cool about that is you'd almost think this is the kind of letter coming from the kid with autism to the typically developing kid.
But this letter is coming from the typically developing kid to the child with autism.
And it's been a really impactful relationship for both boys.
Those skills are there for both of them, and once the skills are there, and they keep interacting with autism over the course of their life, I think they become the ambassadors that we want to help build a very supportive community for people with autism.
- Thanks for sharing!
- See you all tonight maybe.
- All right.
Have a good afternoon.
- All right.
DANNY: You know, even to go back to Donald, they practice interacting with Donald on a regular, routine basis.
That's why they have a supportive community there, because they constantly had the opportunity to interact with somebody with autism.
And we have to do the same thing with the communities that we're working in across the world.
We have to repeatedly get people with autism out into our community, so that we have lots of exposure and opportunity to learn from and interact with people with autism.
That's what's gonna make the difference.
CAREN: When Mickey was growing up, he didn't have many friends, even though there were always people who were nice to him.
- So, what do you think of Scrabble?
CAREN: But the kind of friend who... - Should we play it when we get back?
CAREN: ...who just wants to be around you because of who you are... - Are you there?
- Should we play Scrabble when we get back?
CAREN: ...that was a rarity.
But in the last few years, Mickey has made those kinds of friendships.
- Good one.
CAREN: His friend Matt, he only speaks about 90 words.
But Mickey, Mickey more than makes up for that, and they've become really close friends.
They have a real connection.
And they play Scrabble all the time, and Matt orchestrates all of his answers so that every game will end in a tie.
- Thank you.
I thought that wasn't in the dictionary.
CAREN: Mickey really likes to win, but he also cheers for Matt.
- Good one.
CAREN: In some ways, it's Mickey who has to go more than halfway.
Of course there's one kind of relationship that is way more complicated, no matter who you are.
She likes cats like me.
- She likes cats?
Oh, that's perfect, does she own a cat?
- She likes to do impressions of cats.
- Oh so she meows for you?
- And do you purr?
- I purr.
- You purr when she meows?
- Do you have a crush on her?
- I do, meow.
- Oh, see, I can tell you like her because you meowed after.
- Do you want her to be your girlfriend?
- I want her to be my girlfriend.
Maybe we could come up with a few ways to try to get her to be your girlfriend?
Just three roses please.
- He wants to get three roses for a special friend of his.
- I think that's a good choice, I think she'll like 'em.
- Do you wanna get her a card too?
- I think we should.
So which one should we get her?
- This one.
- Well, do you wanna look at them first?
What does that say?
Well, it's not your anniversary, is it?
- "It's a girl!"
- Nope, she's not having a baby.
- "Thinking of you."
- "Thinking of you," I like that one.
All right we'll get that one.
- All right?
- Yeah, thank you.
- Do you think she'll like them?
- ♪ She'll love them.
♪ CAREN: And I don't know if this crush will ever turn into anything.
But, as his mom, I, I hope he finds somebody.
♪ ♪ It's really such a simple thing.
Not charity, but real friendship.
(laughter) My friend Peter Gerhardt, who works with people with autism... - What's up, A.J.!?
CAREN: ...shared his really lovely take on how much we get back in return.
He said, "If you want to truly understand human emotion, "you should hang out with someone on the spectrum.
"If someone with autism is happy, "there is no hiding they're happy.
"If someone with autism is sad, "there's no disguising their sadness.
"If someone with autism likes you, "then they just like you, "with no other agenda.
It is one of the most beautiful things about autism."
♪ ♪ Do you know how old Donald is, Mickey?
MICKEY: How old is he?
- He's 84 years old.
- He's old.
- He's old.
The 84th element on the periodic table is Polonium.
Why are we talking about the periodic tables?
- Since he's 84.
So what do you think you'll say... what are you gonna say to Donald?
(phone ringing) Who's that?
- It's Donald!
- Put it on speaker.
DONALD (on phone): Hi Caren.
How are you doing?
- Hi Donald.
DONALD (stammering): Are you having trouble finding this place?
- Yeah, we're almost there, I think.
♪ ♪ So while I wanted Mickey to meet Donald, because Donald really is a part of history... Donald!
Hey, how are you doing?
- I'm good.
I want you to meet-- - Hey Mickey!
- What's up?
CAREN (voiceover): ...I wasn't expecting anything dramatic to happen when they finally did meet.
I know Mickey.
And even though in general he's pretty chatty, he can easily get shy when he meets new people, and their meeting was awkward, which didn't really surprise me.
(onscreen): So I've been wanting you guys to meet forever.
- You two finally meet.
- I love it.
- Tell him what you like to do.
- I like Disney.
- (stammering): Yeah I go to a few museums.
- And I also love "Inside Out," the movie.
- Oh yes, I like the beach.
CAREN: I really appreciated how Donald, who is usually quite reserved, did a really lovely thing.
He invited Mickey to spend time with him, doing what he loves to do.
♪ ♪ But golf just isn't Mickey's thing.
- Hydrogen, helium, lithium, beryllium, boron... - You can use both hands.
CAREN: And they still weren't connecting.
Barium... (Mickey reciting elements) But then something happened, when Donald had Mickey over to watch "Wheel of Fortune."
They both love that show.
And they're both really good at it.
MICKEY: Reporter for...
BOTH: ...the student's newspaper.
Reporter for the student newspaper.
CONTESTANT (on TV): Reporter for the student newspaper.
- Got it!
CAREN: And that was where I saw them really start to connect.
It was really something, to see these two men with autism, from such different worlds.
- Thanks for getting my contact.
And, if you call me, I'll see your number.
♪ ♪ We did it.
- Mickey, I've enjoyed it very much.
- Caren, I enjoyed it very much.
- I'll take a hug.
- Yeah, okay.
- Thank you so much, D.T.
- You're certainly welcome.
All right, C.Z.
(Caren chuckles) - I'll see you next time.
- All right, we'll see ya!
CAREN (voiceover): I don't really know how much it meant to Mickey in the moment, but I'm pretty sure he doesn't see the hope in Donald's story the way that I see it, how a community can learn to do right by someone who is different.
(engine starts) I know Donald's remarkable life is mostly because of who Donald is, but I'm not 100% sure, that without the support, and encouragement and acceptance and kindness of Forest, that Donald would be who Donald is today.
Donald Triplett is a happy man.
♪ ♪ Here's the funny thing that's really true.
Mickey is a happy man too.
- Got it.
CAREN: He is a really happy person, he's full of love and laughter, and he isn't touched by some of the struggles that, you know, others have to live with.
And he's safe right now.
But my worry is when he gets outside the door of my home, where Donald has found a way to be a happy man in his community, and throughout his life and in his travels... (in-person): All toasty, toasty?
♪ ♪ You know, I still have hope that Mickey will have that, but I haven't found that yet, in the world, for him.
♪ ♪ ♪ ♪ - Matt, you wanna say anything else?
You can say anything, go ahead.
- Run errands.
- All right.
So Matt wants us to know what his schedule is, and what's next on the schedule, which is of primary importance to him for today.
(Matt chuckles) ♪ ♪ - I mean, I've always been proud to say that I have autism because we have so much more to bring to the table.
Got people who like play music and they may be on the spectrum.
Got people who might be like good doctors, good baseball players, we have something to contribute to society, if you give us a chance.
♪ ♪ - It's kinda like a zebra's stripes, no two people with autism are exactly the same.
There are a bunch of moving parts to this, I mean, autism is just one of them, it's not all of who I am, I'm more than that, I'm Noah, I have...
I have my hopes, I have my dreams, I have my fears, I have my feelings just like anyone else.
♪ ♪ - We autistic people have struggles, um, but we have to adjust for others, but um...
I feel like society has to make accommodations for us as well.
As much as people should accommodate for people on the spectrum, we as self-advocates should also acknowledge that we need to make some adjustments for the other side as well, and I think once both sides starts to make that, make that leap, that's where the real progress happens.
♪ ♪ - What would you like people to know about you?
How about, even though I don't talk, there's a lot going on inside, right?
Just because you're not verbal doesn't mean that you're not a thinking, intelligent, bright human being.
That's what I think she would say.
What do you think, Mol?
♪ ♪ When you call someone low functioning, it dismisses their strengths.
When you call someone high functioning, it dismisses their struggles.
We sometimes go out to the mall and sometimes we do karaoke.
♪ Start spreading the news ♪ ♪ I'm leaving today.
♪ Everybody should know about autism.
'Cause they have to learn a lot more.
They have to learn much better.
They have to learn about tolerance.
I want my family and friends to see the goodness in me.
Because my dream is to see the goodness in all my family and friends.
You know, I'm not that little boy that used to flap his hands or bang his head on the floor.
You know, I have changed drastically through life, and now I see myself as a better person that can help others with autism.
And now, let's talk about something different, shall we?
CAREN: Sure, what would you like to talk about?
We can talk about, uh...
♪ ♪ ♪ ♪ ♪ ♪