
Understanding Autism
3/29/2024 | 56m 51sVideo has Closed Captions
Filmmaker Scott Steindorff learns about Autism.
Understanding Autism follows filmmaker Scott Steindorff as he aims to discover more about his own autism. Speaking to autistic people all across the spectrum, he seeks to reframe the perception of autism by focusing on the identification, diagnosis, and treatment by highlighting the amazing talents and love of neurodiversity.
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Understanding Autism is a local public television program presented by PBS SoCal

Understanding Autism
3/29/2024 | 56m 51sVideo has Closed Captions
Understanding Autism follows filmmaker Scott Steindorff as he aims to discover more about his own autism. Speaking to autistic people all across the spectrum, he seeks to reframe the perception of autism by focusing on the identification, diagnosis, and treatment by highlighting the amazing talents and love of neurodiversity.
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Learn Moreabout PBS online sponsorship♪ Steindorff: My name is Scott Steindorff, and I'm autistic.
♪ I struggle with social cues, organization, planning, emotional regulation, and it's made my journey in life a struggle.
♪ I've had to understand this autistic brain which has not made anything easy for me... ♪ and if I understood my autism early in my life, my journey would be completely different.
♪ I'm just starting to understand autism.
♪ Autism is a wide spectrum.
There are those that struggle immensely with speech and emotions, and there are those that are innovating and creating all the great things in our civilization... ♪ so I'm going on this journey to try to understand what autism is.
♪ ♪ When I was a boy, my superhero was Superman, and my father looked like Superman, and he would come home from work and tell me he was Superman, and he bought me a Superman outfit for Christmas, and I went up to the third story of the house, and I tried to fly out the window--I was 5 or 6-- and I landed and ended up in the hospital, but I never gave up on the dream that there was some special power I could try to connect with, and, you know, I realized that my autism is that superpower.
People's first thoughts on living with autism tend to be a bit too black-and-white for my tastes.
People think we're either geniuses or failures.
♪ People think we're nonverbal or walking dictionaries who won't shut up.
♪ People think we're cold and unemotional or having meltdowns at Walmart because who doesn't?
Not much in between, only black and white... ♪ until you have a different way of thinking about autism.
Then you'll see that it's really a magical, colorful, and quite diverse spectrum full of some of the best people you will ever meet.
♪ Man: Everybody's different.
All brains are different, and the sooner we accept that and embrace that, there is a vast diversity from one individual to another in terms of how their brains are wired, more importantly, how that brain interacts with the environment.
It's really the interaction that creates the opportunities, but also the challenges, too.
♪ Man: Neurodiversity basically means there isn't a single way for the brain to develop.
There's no such thing as a normal brain.
Rather, there are just many different types of brains and that, as we've known in biology, difference is how the world works.
We're not all the same, and that obviously applies to the world of plants and animals.
We think of biodiversity, and we think of it in terms of human populations, in terms of gender diversity, ethnic diversity, but the idea of thinking about the brain as diverse is actually relatively new.
Even within the group of people we call autistic, there are many different types of autistic people, so we have to be very careful not to generalize and say, "Autism is this," or, "Autism is that."
There isn't a single way for the brain to develop.
We're all different, and we should respect those differences.
♪ Steindorff: One of the subtypes of people with autism are those with extraordinary abilities and abstract theoretical thinking.
Biographers have speculated that many of the most revolutionary scientists and inventors had autistic traits, including Isaac Newton, Albert Einstein, Charles Darwin, and Thomas Edison.
Their remarkable contributions have forever altered the modern world and highlight the importance of embracing and celebrating neurodiversity.
♪ What I'm realizing on this journey to discover and understand autism is, we're just in the beginning.
The institution of autism is crumbling because we're finding out more and more every day about how the brain functions.
There's just so much new information and ways to deal with autism that we're just discovering.
What is autism?
There are certain features that are diagnostic of autism that just haven't changed over the decades.
One is social, another is communication, and the third has to do with repetitive patterns of behavior and very intense, limited types of interests.
One of the big hallmarks of autism has to do with social reciprocity, and that is knowing how to get in sync with other people, and that can happen through many different ways-- facial expressions, timing of what you say, how you phrase what you say to suit the other person's informational needs and their social status in relation to you.
♪ Steindorff: As a young child, I could not make eye contact.
I would smile to mask my feelings, so the facial expressions were very hard for me to understand of other people.
You know, for you to not only recognize the facial expression, but to know what they're thinking about by where they're looking, make inferences about them based on their clothing...
Right.
making inference about them based on the way they phrase things, those are all subtleties that just get learned implicitly in nonautistic people.
♪ Steindorff: I knew as a young child at the age of 4 or 5 I was having difficulty with speech.
I was stuttering.
I lined my toys up.
I had repetitive behaviors and patterns, and my father thought I was overly sensitive and said that I was gonna have a difficult time in life because I felt too much.
♪ I grew up in a small town, in Stillwater, Minnesota, and I loved being out in nature after school, connecting to nature and animals, and I was bullied terribly from the ages of 9 till about 13, and it was a very uncomfortable time in my life, so the only relief I had was nature.
Man: Because you have these ideas.
Not knowing lots of people with autism, you do have these ideas in your head about what it's like to meet autistic people, and initially, it was like, "Well, that doesn't seem right," and then as I read more-- because that's what I do and scientists, always new research and information-- I'm like, "Oh.
Well, this starts to explain so much," and so much, people have been expecting things from Lucy that she can't give because she has autism, and you just need to start thinking about things in a different way and looking at it in a different way that works for her, and once I started realizing that, it was a relief to have the diagnosis because then we can start working with her instead of trying to pound the square peg in a round hole.
♪ Lucy: I don't think I really understood what having autism meant for a while after I was diagnosed, and it was hard because I had, like, adults that would follow me in class and help me, and I knew I was different, and I knew that I needed them, but I didn't know why.
I just felt isolated because, you know, nobody was like me, and it was really hard for a while, but once I really understood what autism meant, it was easier because then I could find my community.
[Birds chirping] ♪ Woman: It was just a whirlwind of emotions for me.
She used to talk.
She used to say "mama" and "dada" and "bubba and "nana," and that stopped.
She stopped making eye contact.
She wasn't hitting her milestones, and everybody would tell me, "It's OK. She's still learning."
The pediatrician would say, "Just give her time."
At 10 months, when we were at that one-year-old birthday party, there were all these toddlers running around, and she could care less.
She did not notice anybody running around her.
She just sat in the ball pit hitting two balls together.
I was floored, but then I still had to wait until she turned 18 months to then be referred to Early Intervention, and then we had to go through Early Intervention for another 18 months until they were willing to give her an official diagnosis.
The system is wrong, and it makes me very, very angry.
♪ Steindorff: The system for diagnosing and caring for autistic people originated in the 1940s.
Psychiatrist Leo Kanner theorized that autism was very rare and caused by parental coldness, or, as he termed, "refrigerator mothers."
Because the word "autism" had been defined as a source of shame and stigma, families simply would not talk about it, and pediatricians would tell families, "Put your kid in an institution, "take their pictures out of the family album, and move on with your life."
Steindorff: The refrigerator mother theory has been overturned by researchers who found that autism is mostly caused by genetics, which aligns closely with the theories of physician Hans Asperger.
According to research in Asperger's clinic, autism was genetic, it was quite common, and it existed on a broad continuum that included people with extraordinary abilities.
He referred to some of his child patients as "little professors," and Asperger once said that for success in science or art, a dash of autism is essential.
Asperger was working in Austria during the Nazi regime, and he was complicit in the eugenics program of killing children with disabilities.
Baron-Cohen: Hans Asperger collaborated with the Nazis in signing the referral letters of kids with disabilities to go to a clinic that was actually known for euthanasia.
♪ Steindorff: Asperger's work was largely forgotten until the 1970s, when psychiatrist Lorna Wing rediscovered how common autism is after doing a survey.
♪ As a culture, we're still reckoning with how common autism is and how few resources are available for children with high support needs or low support needs.
♪ Steindorff: So Misha is 11... Man: Misha is 11.
Yep.
and he goes to a special school.
Tell me about his school.
You go to Perkins?
Perkins?
Perkins.
Yeah.
Oh, nice.
Very nice.
Summers: Hi.
My name is John Summers.
I live in Cambridge, Massachusetts.
I'm a research fellow in history and disability at New America, a writer, a ex-college professor, and, most important, I'm a single father of two children.
[Device chimes] Ring-a-ling-a-ling.
Yeah.
[Children's music playing] Ha ha!
Can you turn it down, please?
Steindorff: So you're a full-time, 100% dad for your son and daughter.
Full-time care when he's not in school.
My daughter is just an indispensable part of Misha's life in terms of caring for him, but that's it, so otherwise, it's me.
♪ Niusha: To get close with Misha, I've always just experienced things with him.
I show him that I'm here for him and I love him.
I tell him that every night when I put him to bed.
Steindorff: What I find with autistic families is, there's an enormous amount of love.
There is.
Yes.
Years ago, it was mixed with a good bit of anguish, Right.
I should say, and much of that anguish was due to being put in a position of such radical uncertainty-- what was happening, what was not happening-- and the neurologists diagnosed Misha in about 20 minutes in an office visit and then said that, "Well, it's a lifelong condition.
"We don't know what the limits are.
"We don't know what the causes are.
We have no cures.
Have a nice day."
♪ Man: Oh, Isra'el was diagnosed at the age of two years and 9 months, so that's where our journey initially began, and I didn't realize it was gonna be called what I called a battlefield of autism.
♪ When Isra'el was a little boy, he would walk up to the little girls and would smell them.
He has very keen sense of smell, and that was one of the most things that was so uncomfortable because parents would look and say or the child would say, "Oh, why is he smelling me?"
and one thing that I realized, I don't owe anybody an explanation about my son as far as, well, to just say, "Maybe he likes the way she smells, her perfume, or could be the laundry detergent that she used," and so forth, but a lot of parents try to make justification and explain and so forth.
My son is perfect the way that he is, and I accept him the way that he is, right, buddy?
Yes.
Yes, love you.
I'm proud of you, too.
♪ Received the call from the school psychologist, and she said that he had blurted out in class that he wanted to kill himself, and when I heard it, I was devastated.
I was shocked because I never saw him have that type of response or just to be at a bottom place like that, and it scared me.
It scared me so much, and then it said-- it made me evaluate how I was advocating and standing up for my son, and what was I gonna do next, and then on the hindsight of that, it came because, "The children," he would say, "no one else has autism.
He's the only one."
Since he doesn't have behavioral issue, he gets lost.
The other children have the behavior, so they get all the attention.
My son's a sweet, loving, kind, gentle being, and so I don't want you to ever feel like that.
Do you understand me?
Yes.
OK. Baron-Cohen: Autistic people may be more at risk of poor mental health, or many of them struggle to make friends, and society isn't trying to bring them in to make sure they're not isolated, and that poor mental health, you know, regrettably, translates in many people into suicidal feelings and even suicide attempts.
In our research, we found 2/3 of autistic adults had felt suicidal, and 1/3 had planned or attempted suicide.
These are shocking statistics, and feeling suicidal should not be part of an autistic person, and yet that's what is happening because we're not supporting autistic people adequately.
Between 1% and 2% of the population are autistic.
1 in 3 autistic people have learning disabilities, also known as intellectual disability.
♪ 1 in 3 autistic people are minimally verbal, meaning they have less than 30 words.
♪ Steindorff: So, Dan, what are you doing in this lab?
Man: We're going all the way from identifying genes that cause or contributed to risk for autism to using genetic engineering to study those genes in stem cells.
For most people with autism, it's a combination of many, many genes, each with small effect.
It's called polygenic risk, and we don't yet have a handle on how to use that in an individual yet, and so we're at really early days, but even though we're at early days, the field has identified more than 200 genes.
I mean, we're in a totally different place than we were two decades ago when I started out.
♪ Steindorff: Another research finding is that women with autism have been undercounted and overlooked, so I talked with Professor Zhara Astra about exploring the female side of autism.
♪ Astra: For me, when I got my autism diagnosis, I went through these stages of grief where at first, I felt a sense of relief because I was finally able to understand who I was and why I was the way I was, and next, I went through imposter syndrome where I didn't believe it-- "I'm not really autistic"-- and I needed a second opinion, and then I went through acceptance, and then I got angry because why did I go so long without being diagnosed?
♪ I had some pretty severe OCD tendencies as a child, doing these rituals that I just felt like I had to do or I was gonna die.
If I got into a car, I had to knock my knees together one time, 3 times, one time.
I was constantly trying to hide these tics and traits because I didn't want anyone to think that I was any weirder than they already thought I was.
Emotions have always been really complicated and hard for me to understand and to process.
I just felt like an alien.
♪ I'm now an autism advocate and a professor at Arizona State University, where I created a course on understanding neurodivergent women.
Landa: There are more males than females being diagnosed.
It's just been repeatedly the same ratio-- 3 to 4 males to every female.
We have higher rates of domestic violence against us.
We have higher rates of sexual assault.
These are things that affect us disproportionately, and it's not about who we are as people.
It's not our fault.
What it is is, society is not designed to support us, and as long as we look like we're doing fine, we do not get the support that helps protect us from these vulnerabilities.
Woman: There is a lot of space for improvement as we are thinking about diagnosing females.
Clinicians are really focused on understanding where those differences are, reasons why we may have been missing girls early on, and how that female presentation may look a little different.
I mean, a lot of autistic people have, like, stims, and I think neurotypical people don't really-- It just feels--Try it.
Like, it feels so good.
Like, just if you get it the right way and, like, everything gets loose, I'm just so tense all the time, and it just--ohh... Ha ha ha!
That does feel good.
I know, right?
♪ Woman: And by the time I was 23, I thought to look up autism and women, and I came across a traits list that was the full description of me in every way, shape, and form, so I from there decided to read books about it, about autistic women, written by autistic women, and I just knew.
I just knew it was me, but I still wanted to seek a professional diagnosis, so that took about 6 months because, you know, it's hard to find specialists that understand autism and women and girls.
I think my stims were definitely overlooked or explained away.
I twirled a lot.
I walked on my tiptoes.
I was a late walker and then walked on my tiptoes, and I also sucked my fingers until I was, you know, like, 12 years old, but no one really thought about it as an autistic trait.
Astra: So you were twirling, and then you eventually get into dancing.
Mm-hmm.
Yeah.
I mean, I always wanted to just express myself through my body, through the vestibular sense and the proprioceptive sense and all of that.
I would go to, you know, the middle school dance, and I wasn't actually good at dancing the neurotypical way.
I could only dance, really, my way, where I could feel the music just completely vibrating through me.
[Techno music playing] ♪ Woman: There's no power like autistic girl power-- the academically, friendships, kindness.
We're fixers.
We think of autism, right, and we think of someone that fixes tech, someone that fixes something mechanical.
Autistic women, who are also very good at STEM-- don't get me wrong-- we fix the social fabric of the world.
[Birds chirping] Woman: We have to focus on a lot of different experiences that we haven't before, and that includes the Black experience, the Indigenous experience, the Latino experience.
The marketing needs to be done so that you see the face of autism in every man, woman, and child across the planet.
No matter what language they speak, what they look like, it doesn't matter.
Autism does not know race or linguistics or country of origin.
♪ Bonas: Hi.
I'm Carter Bonas, CEO of Spectrum Golf, and I am a golfer.
Thing I like the most about golf, I can just be in nature, and I really like to look at the animals in between my shots.
It looks very nice, and it also relaxes my nerves and calms me down when I'm angry, just feels really amazing, and it makes me really happy.
I just love playing golf.
Steindorff: So, Carter, tell me about being "Sports Illustrated" Kid Athlete of the Year.
Well, I don't have much to say, but it's just super amazing, and I never thought I would get this far, never.
A lot of us have a lot of special abilities and some people... Special skills.
they don't have the ability to see or touch, Right.
or speak, but that doesn't mean we should bully them and tease them.
They're still human.
They still have feelings.
Yes.
Woman: You got to look at him when you're gonna talk to him, OK?
OK. All right.
It's important.
He's not out there.
He's right there.
Steindorff: It's OK if he does this.
OK. Let's let Ari be Ari and-- That's great because he will-- No.
You have to sit here, sir.
♪ The Color of Autism was formed because my son Ari was diagnosed with autism spectrum disorders, and it was after me realizing that something was a little different about him, and I kind of went on what I like to call the tour, where I went to the pediatrician and I went to this person, and I went to that person.
Everyone would say he was fine, but he didn't have any words, and he was a late walker.
♪ I started the organization because what does a young Black man that doesn't have any words do when he's approached by the police and he doesn't understand what "yield" means?
So I knew that something had to be done in order to protect these children but also to bring awareness within my own community about what autism is and how we could advocate as a community to make things better.
No matter whether they have high support needs or lower support needs, we just have to be there for them and loving them because love goes a long way.
When you figure it out, like, I think about how much time I wasted on thinking about myself, and I feel bad about that because when I took the focus off me and I said, "Hey, you're stimming.
"You're not bothering anybody.
You're doing this, you're not bothering anybody," it makes you-- Like in school, just stim while I'm trying to focus.
Thank you, sir.
He's not bothering anybody, so I learned to enjoy him, and we have to open a door so they can thrive and be who they should be.
♪ Woman: Elizabeth spoke until she was 15 months old, and then suddenly, her words were all taken from her at 15 months.
Suddenly, everything changed.
♪ Voice: There are 31 million nonspeakers with autism who are locked in a silent cage.
Steindorff: And so we need to get computers and technology into schools and allow this to happen.
Can somebody give me a rational reason why this is not happening?
♪ This is a matter of money and ego.
The service providers will lose money and have to admit they were wrong about our capabilities.
♪ Steindorff: You and Elizabeth had to fight for her right for education, her right to communicate.
Woman: We hired a lawyer.
So you had to go to court to have her educated.
To have her be in public school.
♪ ♪ It's gonna be an interesting day.
How are we doing on homework?
I haven't looked this week.
Pretty good.
I mean, quarter just started, so, you know, I don't have a lot to do, but I'm working as hard as I can.
[Vehicle door opens] ♪ I love you.
I love you, too, so have fun today.
I'll try.
Hey, don't fight anybody.
You are taking the fun out of everything.
Ha ha!
Do your best.
♪ Woman: This is a public charter school, and the best things about Lionsgate is, Lucy is proud of being autistic.
It's a positive part of her identity.
Woman: If I were to feel really, really excited, what might my line look like?
Really excited.
Super fast.
Yeah, super fast.
OK. Woman: I mean, we want to use this as an opportunity for them to express and explore what those emotions that they're feeling mean and how the outside stimuli of the world can bring in different emotions.
♪ This is about them really tapping into their own inspiration and making sense of their world, using art to make sense of their world.
Gabrielle Zwi: ♪ Facing a world of wonder ♪ She took only steps but left more than just footprints ♪ ♪ Oh, oh, oh, whoa, oh, whoa, oh... ♪ Did it make you feel itchy?
Itchy.
Yeah, itchy.
How'd that make you feel?
Happy.
Excited.
Ah, happy and ex... Zwi: ♪ She said, "Fall in love with yourself ♪ ♪ "At your deepest roots ♪ Water the trees that grow inside of you" ♪ McCullum: We didn't know what autism was, so when she would have a meltdown, it was a tantrum, and we constantly have to learn and revisit that.
"No.
This is not a tantrum.
It's an autistic meltdown.
This is not depression.
This is autistic burnout."
Mm-hmm.
You know, "This is not anxiety."
It's sensory overload.
"This is sensory overload."
Yep.
I didn't know where she was on the spectrum, and I was always, you know, hoping for her to be further up on the spectrum, further, further, further, but then, you know, we understood that we kind of hit a ceiling where it was we saw all that her challenges were.
She constantly takes her clothes off.
She runs away from home, so we have to lock her inside, and just sometimes it just feels so wrong to have to, you know, contain her just so she stays safe and she doesn't get hit by a car, you know?
I had a lot of depression, and it just-- Well, I was really angry.
What were you angry at?
Well, like, "Why my child?"
My life is for service to those who are voiceless.
Mm.
Literally voiceless, and so you wrote a book called "I'm in Here"... Mm-hmm.
which was your experience With not being able to communicate all of that brilliance and that life that you have within yourself.
I wrote 70 poems, and they were published in "I Am in Here" more than a decade ago.
I want to give families hope.
♪ I know something about shared achievements because I am affected by a form of autism that doesn't allow me to speak.
♪ I am not special.
All nonspeakers are fierce advocates once they learn to type.
Steindorff: In your commencement address, you bring up Viktor Frankl's book "Man's Search for Meaning," my favorite book, Yeah.
about service, about gratitude, about life, and you... are that example.
About sharing your last crust of bread, that's what it means to be human.
Wow.
Can I give you a hug?
Ha ha ha!
You are such a beautiful soul.
Ha ha ha!
Thank you for everything.
Thank you for doing what you're doing.
I have struggled my whole life with not being heard or accepted.
A story on the front page of our local newspaper reported how the principal at my high school told a staff member, "The retard can't be valedictorian," yet today here I stand.
Each day, I choose to celebrate small victories, and today I am celebrating a big victory with all of you.
♪ Many individuals with autism do not have well-developed spoken language skills, so we need to get comfortable with lots of nonverbal communication, too, and we need to get comfortable in our own skin so when things happen that are unusual or a surprise that we don't feel threatened or alarmed.
Rather, we're simply curious, and we can take that moment and turn it into something very positive and constructive.
[Birds chirping] ♪ Steindorff: And so we're at the horse farm, which I just saw her ride horses... Woman: Yes.
and she really seemed to love it.
Yeah.
She took to that very quickly, and it didn't take too much, and then as they ride through the trail, as you probably saw, they have sensory items out there for them to reach and touch, and she was able to take her hands off the saddle and touch things, so we were delighted.
♪ Steindorff: And so you come here, and there's 30 horses, and you know all the horses.
Yes.
I know them.
I've probably ridden all of them at some point in my life.
And so do you feel more connected to the animals than humans?
Yes.
I like animals a lot more than people.
Yeah.
It's easier for you?
Yeah.
They're not as chatty.
Ha ha!
Woman: My mother discovered I was really good at art, but I would draw the same horse head over and over again, so she took my special interest and broadened it.
You want to take that special interest and make it less fixated, so if a kid likes cars, then let's read about cars.
Let's find out how they work.
That would be science, and so she got me doing lots of different kinds of art media.
[Piano playing] ♪ Derek, that was so amazing.
Derek, people say, "How do you do it?"
How do I do it?
Yes.
How do you do it?
How do you do it, Derek?
And it's because you've got this amazing thing called perfect pitch... Called perfect pitch.
so if I play a whole load of notes, like a scramble, isn't it, and it's like-- [Plays chord] [Plays same chord] Diminished 7th.
Ha ha!
Or just any sort of random thing like this.
[Plays random notes] [Plays same notes] Or just something like this.
[Plays glissando] [Plays notes] Uh... [Plays same glissando] Yes, Wow.
so that all happened when Derek was between zero and 24 months.
Steindorff: Early brain development of an autistic brain that gets very specific about patterns.
Ockelford: Absolutely, and then the kind of obsessive interest in music above all else...
Yes.
then meant you just played and played and played and practiced and practiced, and so it's those two things.
You need both things.
[Piano playing] ♪ Bravo.
Yay!
Yes, Derek.
Thank you so much, Derek.
Thank you, Scott.
You are expressing love in so many ways in your autism, I love it.
Yes.
♪ Steindorff: So we are in Keystone, Colorado, and doing my favorite thing in the world, which is skiing, and it actually was my special interest, and it gave me self-esteem, and I ended up competing on the U.S. Freestyle Ski Team.
If I didn't have this, I don't know what would have happened.
♪ So this is my happy place-- to have my skis on, to be up in the mountains.
I relax.
I don't worry.
I would call this autistic joy.
♪ Astra: I think it costs $5,000 to $8,000 on average for an adult to get an autism diagnosis.
It's a luxury and a privilege that not everybody has.
And I understand that it's not just a luxury and a privilege, but it also opens up sadness when you think about the years that went by when you struggled so very much without having the proper supports.
♪ Baron-Cohen: I think what we want is a world where everyone feels welcome, and I think what we've got at the moment is a world where some people--and autistic people are just one example-- do not feel welcome.
You know, if you've sent 400 job applications off to try and get a job and you've never had a reply because somehow your autism is maybe not allowing you to see how to write that cover letter and how to present yourself in the best possible way to get that job, you know, it means that our systems of helping people into work are failing this particular group.
McCullum: We finally just got her iPad.
This is what we really need to use to have her communicate.
Voice: I feel thirsty.
You're thirsty and tired.
OK. OK, honey.
Here.
Here.
Here's your water bottle, OK?
McCullum: We realized that we are special needs.
We all need support-- the parents, Mom, Dad, the brothers, the babies, you know?
Like, we all have special needs because she has special needs, and so we have really banded together to create a beautiful community within a community, and we're going out, and we're sharing our story with bravery and courage so that the world can welcome us.
McCullum: Aloha.
We are Autism Moms of Kona.
We're gathering here today for our monthly support group, so, for me, it has been such an amazing outlet, you know?
You know, for years, I was stuck at home, and I refused to leave the house, and I only had one friend who used to come over and help me with Ava, but now I've found the courage to get together because I know I'm not alone in it, right?
Go, Kona!
Cheese!
Man: OK. Let's hit the water, yeah?
[Cheering] McCullum: [Chuckles] Nice.
Ooh.
McCullum: Ava really loves the water.
♪ It brings her such a sense of calm and pure joy, and we have worked so hard to come together to make this happen for her... [Sniffles] and helping her to find her joy, we find joy along the way.
Man: Instead of feeling as a victim or as a problem, it's just such a blessing.
You know, she's here to help us, as well.
♪ Steindorff: I have 3 children on the autism spectrum.
♪ My youngest daughter Jaime had watched a program on autism and came up and said, "Dad, you are for sure autistic, and you need to deal with it," and it was very, very difficult for me to accept that, and I sought out a very well-known therapist in New York and got tested, and she interviewed everybody in my life, and I was shocked at what I discovered.
Jaime: I feel like the first time I realized that you were different, I was in elementary school, and there was a fair going on, and I think I was doing, like, one of those cake walks, and you were so excited, and you were clapping, and you were yelling, and you did your beautiful, giant laugh, and I remember telling you to take a walk.
It's one of my most shameful memories, but I remember feeling really embarrassed because you were louder than everybody else.
My friends used to say, "You like going to parades "and fairs and playing with video games or the video arcades," so now I look at that and go, "You know, maybe I was too loud and acting too kidlike, but I enjoy that."
No, and I love that about you now.
Yeah.
Yeah, but you didn't love that when you were a kid.
It was confusing when I was a kid.
It was really confusing.
I was just like, "I'm a kid..." Ha ha ha!
but now I absolutely love it.
What was the most difficult thing for you as a child with me as your parent being autistic?
I think the heightened emotions and not knowing, you know, if you were yelling, that meant you were scared or if you went quiet, that meant you were really stressed out, not knowing what your emotions were or what was gonna come next.
I think that was the hardest part.
And how did you come to a place of peace with it?
♪ Oh, you haven't.
Oh, I haven't.
Ha ha ha!
Ha ha ha!
To be continued.
Ha ha ha!
♪ Woman: Time to reset?
OK. We'll do more.
There's too many numbers.
There's a lot of numbers.
There's a lot of numbers.
Steindorff: You're taking classes to learn how to apply for jobs.
Lucy: Yeah.
I mean, that must give you some comfort, right?
It really does, especially because last summer, I really wanted to figure out how to get a job, so knowing that I have that class and that resource is really helpful.
So I've noticed that about this school, is, it helps you overcome all those struggles and challenges that we have with autism.
Yeah.
There's some overcoming challenges, and there's some finding ways to deal with and cope with those challenges because a lot of the time, it's just a neurotypical space and autistic people have trouble fitting in.
♪ Steindorff: For me, I couldn't regulate my emotions, meltdowns, didn't understand what I was feeling.
♪ I wish I could take back all those years because it must have been so hard for you, and I feel so bad about it, but I didn't know any better, and I'm taking responsibility for it, and I'm sorry.
They won't bite?
No.
♪ You have been so such an inspiration to me, the work you do in charities and helping people.
It's just beautiful.
I'm so proud of you.
♪ Jessica: With autism, it's interesting because I feel like between you, me, John, and Jaime, we all process emotions differently.
Like, I don't understand jealousy in any way.
I can't read sarcasm-- I take everything literally-- but I do feel like my resilience came from waking up every day as, you know, a 10-, 11-, 12-year-old and wanting to die and having to live through that, you know, and not having a "Oh, this is why."
Like, I had to figure it out for myself, what makes me happy, and, I mean, I found it.
Steindorff: Yeah.
You really did.
♪ Steindorff: Your sister Jessica is interested in animals and trying to figure herself out and people out, and, for you, drawing figures of people... Straight to naked people, yeah.
it's for you to try to figure them out.
We're each learning.
Yeah.
Break it all down.
Yeah.
Well, there's a transparency to that, right?
Yeah.
There is.
Yeah, a simplicity, a transparency, a technological aspect to it that's very calming to me.
Yeah, Yeah.
and so it just makes you happy.
It does.
Yes.
It's your autistic joy.
It's my autistic joy.
Exactly.
Yeah.
I was in London making movies, and you came over, and we both had this wonderful time going to every art museum, and then you ended up going to art school in Greece.
Yes.
Yeah.
We would go to the British Museum every week.
You would take me there, and those are some of my best memories.
You would just let me explore for hours at a time.
You would explore, and seeing the Elgin Marbles there led me to apply for a school in Greece, then.
Yeah.
It was a big part of my life.
And so it's your life now.
You're an artist and into art restoration and-- Pursuing it, yeah.
and so I'm very proud of you for that.
Thank you.
I love you.
I love you, too.
Steindorff: I think the key is understanding autism.
That is the key to what we're doing here.
And what we're seeing is that there's so much that we don't know, and what I've seen through and through from all the autistic people that we've interviewed is, they all agreed to be a part of this project because it was created by actual autistic people, because they have said time and time again, they're tired of neurotypical people and doctors speaking on their behalf.
Autism is a very special thing, and if you look it up, a lot of the world's smartest people have had autism.
It's not a disability.
It's nothing like that.
It's a special power that you--you have.
That is, like-- Congratulations.
Do not let anyone take that from you.
Do not let anyone try to steal that from you.
Me personally, I love being autistic.
I would never change that for the world, and don't think that you need to be one of those normal kids.
There's no such thing as normal.
Just be who you are.
Be happy with yourself and use that power to make the world better.
I think people with siblings like mine should try to communicate with them.
Be with them.
Show them that you care because they notice.
They know that you're there, and they can tell.
A lot of people think that people with autism-- especially people like Misha, who are nonverbal-- they think that they don't have anything inside their heads, but they're obviously thinking about so much.
They have so much in their personality that we can't tell.
If there was a pill to take that would take away your autism, would you do it?
No.
I would not.
Because you like how you're wired differently.
Yes.
I like how I-- I just compute differently than other people, and it's really fun to be that different.
So you enjoy being different.
Oh, yeah.
Of course.
I've always liked to stand out in a crowd clearly.
♪ Steindorff: We live in an autistic world.
♪ What most people don't recognize is, they pick up their computer, and the computer program was probably created by an autistic person.
Your social network, ironically, was created by an autistic person.
Most of the inventions and great things that we live by were created by autistic people.
♪ We need to appreciate autism, be grateful for autism because it's changing our world for the better.
♪ Jones: Be proud of being autistic, and then other autistic people will also feel proud, and then you're gonna meet some really safe, happy, kind peers.
Jessica: My message to any girl, any boy struggling with autism is that it is your superpower.
It's the one thing that you have that most people don't.
You can look into the souls of other people, and it's a real-life superpower.
Embrace it.
♪ Steindorff: Learning about my autistic brain, learning from all these fabulous people and families and autistic people on this journey has made me realize that I finally am home, and I feel a part of something, a community, and it's so beautiful.
Thank you.
♪
Understanding Autism is a local public television program presented by PBS SoCal