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Short filmTranscript
00:00You
00:30You
01:00You
01:02You
01:04You
01:06You
01:08You
01:10You
01:12As an artistic person who's commonly struggles with sensory challenges, I understand the importance of inclusive environments.
01:22Leaving the house is a lot to deal with. There's a lot of sensory input.
01:28I try to teach doctors the understanding that our own biases play a huge role in how we interact with patients with sensory issues.
01:40When you have sensory inclusive spaces, things are better for everyone.
01:47I believe there is a paradigm shift happening around our sensory health.
01:53And I would love our low sensory spaces to be more mainstream.
02:00The world is slow to change. We all know that.
02:03But it's important for us to start a conversation.
02:06And that's why advocacy is so important.
02:08I hope that people see families like mine as not some societal problem to fix.
02:18We just want to be seen. And not gawked at or stared at. It's just a different way of being human.
02:26This world affects people different ways. And I think knowledge is power.
02:34Once you have the knowledge, then you can maneuver the way you want to.
02:38Pella, do you want an apple or something to tie you over too, or are you good?
02:56Pella, do you want an apple or something to tie you over too, or are you good?
02:59No, I'm good.
03:00Okay.
03:02Here we go.
03:05Do you want more water?
03:07Al danda.
03:08Al danda? You want milk?
03:11Juice?
03:13Juice?
03:14Okay. I'll get you some juice.
03:16My name is Lala Dada Ali. I'm a mom, a wife, an attorney, an advocate.
03:26My husband Tosa and I have been really blessed to have two children.
03:33My daughter's autistic. My son's autistic.
03:36Come here. Come here.
03:37Breathe.
03:39One.
03:40Two.
03:41Two.
03:42Three.
03:43Four.
03:44Four.
03:45Come. It's cooking. Come on.
03:47Alero is eleven.
03:49Look.
03:52She's what people would categorize as minimally speaking.
03:56She has fries in there?
03:58Water, okay.
04:04But we call it minimally speaking, maximum opinionated.
04:09Little yummy
04:11Okay, you got what you wanted.
04:15Then we have my son, Fela.
04:19He thinks he's 30, but he's 13 years old.
04:25And he is very much highly verbal.
04:29He, in school, is classified as gifted and talented.
04:34So we are balancing quite a bit as we raise a preteen and teen.
04:40Fela and Alero's diagnosis were one year apart.
04:47They got the diagnosis, and that was life-changing.
04:51Whew.
04:53And to now know you have two babies on the autism spectrum
04:57and not knowing what the future can hold.
05:00I remember those early days being filled with fear and deep concern.
05:05There's an aunt that I told this story to.
05:13And I cried because I remembered the moment of all those things that happened.
05:17And she let me, you know, do that Oprah ugly cry.
05:21And she looked at me and she held my hand and she said,
05:24I know you've been through a lot.
05:27But I think it's time to act like you went to the store and you bought it.
05:34And I sat back.
05:37And it changed a lot.
05:39I stopped looking at it like something that happened to me.
05:42I started looking at it like, okay, if I literally went to the store
05:46and I bought this life, how would it look?
05:52So which one?
05:54Yeah.
05:55Want the black one?
05:56Yeah.
05:57You're in your goth period?
05:58Okay.
05:59That's fine.
06:00We'll do black.
06:02My brother Kunle, he's on the spectrum too.
06:06This is back in the day when people referred to intellectual disability
06:09as the R word, which I will not say.
06:12When you think about the type of resources that did not exist in the 80s and 90s
06:17versus what exists now, I wish my brother had that.
06:23And that also fuels me with my children because my daughter will require lifetime care.
06:30Mommy's turn, then Alara's turn.
06:31I'm constantly thinking about the 18 year old version, 25 year old version, 30 year old version of them.
06:49And I want to have as many neuro-inclusive experiences in their life as possible.
06:55I'm Virginia Spielman.
07:00I'm a British trained occupational therapist.
07:04I'm at the Starr Institute, a global centre for research into sensory integration and processing.
07:11We all have sensory sensitivities, but when we talk about sensory integration and processing,
07:18we're trying to understand part of that population of people who have sensory processing differences.
07:25There's a wide range of the ways people process and experience the world in their brains and bodies.
07:31And they have different enough ways of experiencing the world.
07:35They have different needs and contribute beautiful, diverse thoughts and ways of being.
07:45We really want to have a narrative around neurodevelopmental differences
07:50that recognises the strengths, allows for pride and recognises the disabilities.
07:58But it's still a work in progress.
08:05My name is Spike Lee. I'm a filmmaker from the People's Republic of Brooklyn, New York, Fort Greene.
08:13I grew up in the mid-60s. It's a whole different world, you know.
08:18Growing up, I didn't know what I had.
08:21I never knew the words or terminology.
08:24It's like, I just get stuff mixed up. And that was it.
08:27So it wasn't until my son got diagnosed with dyslexia that I had the right term.
08:35I just know that there's something in your brain that's different.
08:42And the difference is great.
08:44And now I understand myself much more.
08:46So looking back, I think that's to me, that's one of my superpowers.
08:51I'm Brunette. I'm agender, non-binary, autistic, neurodiversion person.
09:12Well, I describe myself as introverted and attention hyperactive.
09:21My whole child was hard. It was really hard.
09:27I have tried to explain saying that I'm autistic, but the doctors weren't listening to what I said.
09:34I have a feeling my mom suspected that I was autistic, but it's also possible she didn't know about it back then, like in the 90s and stuff.
09:51I never felt like I could do anything.
09:53I was just struggling for a long time to perform as a normal child, which is very much artificially constructed.
10:04Bernard is my twin sibling, right in the goal.
10:08We'd both had struggles with sensory challenges for years.
10:13We often go places together.
10:15It feels just safer, and it makes things easier.
10:18Also, we seem to use less energy that way.
10:21And going out is so exhausting anyway.
10:24There's just a lot of sensory input, just a lot of stuff.
10:28And I'm always processing it.
10:29So I usually wear gloves and sunglasses just to make it easier to deal with.
10:41You've got your classical five systems of taste, touch, smell, sound and sight.
10:48And then you've also got in your inner ear a really cool piece of apparatus that tells you about motion.
10:56There's also my proprioceptive sense, which is about the force I'm using, how fast or slow my muscles are contracting.
11:07And then there's all of our internal sense of what's going on in our body, which is interoception.
11:14These systems within systems within systems within systems all work together to give us our big picture of the world.
11:23And as I am filled with sound and sight and smell and so on, there is a threshold beyond which I'm processing more information than I can keep up with.
11:40And my body starts to find it difficult to detect threat.
11:46So I'm going to become even more overwhelmed as I become hypervigilant.
11:51It can result in lots of states of dysregulation.
11:54It's the sensory input that's all unpredictable, which is all of it.
12:04The varying levels of voices, clattering of utensils and people walking.
12:12But then also all of the movement.
12:21Makes it hard to take conversations.
12:25Sometimes voices sound very garbled or crackly.
12:28So there's a lot of noise around.
12:30It's hard for me to understand what people are saying.
12:32Loops really help.
12:35They're kind of like earbuds.
12:37You put them in, but they have a filter.
12:39You can adjust sound levels and they tend to block out a lot of noises and make people's voices easier to hear.
12:47As a person who struggles with sensory challenges, I understand there aren't enough sensory inclusive environments.
12:54I believe there is a paradigm shift happening.
12:59We're seeing lots of different groups of people come to the same conclusion that what has been happening before cannot happen anymore.
13:11The narrative needs to move from sensory inclusive spaces being the exception to them being the norm.
13:21What is your coffee, love?
13:24Welcome.
13:25Y'all have a great day.
13:26Thank you, you too.
13:27See y'all this afternoon.
13:51How's the things at home been?
13:59Brushing's been good?
14:00You said she's losing some teeth.
14:01She's losing her rollers, her back teeth.
14:04Are you ready?
14:06What you want to do?
14:07You want to brush them or you want to play?
14:10You want to brush?
14:12Well, get your blanket.
14:13Get your blanket.
14:14You've outcroed to the table.
14:21Beautiful.
14:23All right.
14:24Mama, can I have that tray, please?
14:25Sure.
14:26Thanks.
14:27All right.
14:30Let's see.
14:31Let's see how good of a job we're doing here, kiddo.
14:34My name is Jacob Dent.
14:36I am a general dentist, been practicing for the last 21 years, and I am a father of two,
14:43and my son, Ethan, is on the autism spectrum.
14:47So I've focused most of my practice now on neurodiverse and neurosensitive populations.
14:53Yep, that's a wiggly one right there, Mama.
14:55Which one?
14:56Right there.
14:57Okay.
14:58That one's, that's a baby tooth.
14:59That one's coming out.
15:00Is it?
15:01Yep.
15:02Ethan didn't speak until he was three.
15:04And so, you know, as a parent, I was doing everything I could to not get that label.
15:12I didn't want him to be autistic.
15:14I wanted him to be delayed.
15:17And hindsight 2020, you realize how ignorant that was.
15:22But I always wanted to be able to teach Ethan the things that I think every young man should
15:31know.
15:32Things that I was taught by my father.
15:34And, um, when we got the diagnosis, my biggest regret was, I didn't think he was going to ever
15:43play sports.
15:45I'm playing next.
15:47Baseball.
15:48Baseball.
15:49All right.
15:50Let's do it.
15:51And I don't know why, but that triggered me into a depression about how I looked at the
15:58diagnosis.
16:01Because in my mind, that took away something that I was hopeful for, for him.
16:07He'll never drive a car.
16:09He's never going to get married.
16:11He's never gone.
16:12And there was a lot of nevers that came through all of that.
16:15And again, it's not Ethan that's upset about it.
16:20It's me.
16:21What do you want to play tomorrow?
16:23You want to finish up and deck out the grass?
16:25I said, why me?
16:27You know, why did I get a child with autism?
16:31And then they surprise you.
16:38His limitations are so much less than what I thought.
16:44I'm the biggest limiting factor for him.
16:48Until we got our diagnosis and until we started the personal journey with it, you realize how ignorant myself as a doctor was to this population in the beginning.
17:07We did find that we struggled a lot going to medical doctors because, you know, as you went to a medical office, there's always a waiting room full of people, loud noises and bright light, which is not sensory friendly.
17:22For us, we started to realize that there's got to be an alternative way.
17:27We need more sensory inclusive spaces because everyone deserves quality of care.
17:33And for someone with a sensory disability, they need that access to an environment that they're comfortable in.
17:44And so that's kind of really where where my ramp as a professional came from.
17:50And as the years have gone on, I actually converted half of my practice to be sensory friendly.
17:58Because if you have a healthy mouth, you have a healthy body.
18:03People don't understand when you start to lose your teeth and you start to decline because you don't get proper nutrition from chewing your food, then your life expectancy goes way down.
18:21At the Starr Institute for Sensory Processing, our vision is for sensory health for the state, the nation and the world.
18:28Universal design should be sensory design.
18:32When there's a ramp into the building, everyone can use the ramp.
18:38You know, and when the building accommodates sensory differences, you're going to have more success, greater productivity, less burnout, less stress.
18:52When we don't deal with these differences as a community, the cost is exclusion.
18:58It's trauma.
19:00Every day, all day.
19:06Dr. Taylor, welcome to the Not Your Mama's Autism Podcast.
19:10Thank you. I'm happy to be here.
19:12But from the start of your journey to the present day, can you tell us a little bit about trends you've seen, maybe the way people look at autism and developmental disabilities?
19:24Things have definitely changed overall.
19:26The research has definitely grown.
19:30We understand a lot more about underlying causes of autism, what might be.
19:36Not Your Mama's Autism Podcast was birthed out of an idea that has been on my mind for a long time to chronicle a family's journey into autism and disability inclusion.
19:50Because I can't tell you how many times in my private advocacy chapter people would approach me and want to learn and want to talk to me about resources, but they often thought they were alone.
20:06So I thought, okay, if we can take our advocacy journey and make it public, people will know they're not alone.
20:12We have worked on some training for specialists.
20:16One thing that we know is that women with autism do not get the kind of female healthcare that they need.
20:25And that goes even further.
20:26It goes to dentistry.
20:28It goes to many other specialist conditions that require these really intense medical examinations that are aversive to anyone.
20:39They're not pleasant experiences.
20:42So we're working with her occupational therapist because she does have more significant sensory challenges.
20:48I'm not on the autism spectrum, but I have sensory sensitivities, so I understand this.
20:54It's a form of thinking with a universal design mindset.
20:58So if you try and design something for one group, it ends up being beneficial for other groups as well.
21:06And sensory issues are a common challenge with autistic folks.
21:11I completely agree.
21:13And I think when I've been giving trainings, particularly over the last several years, I really try to focus on the idea that we have sensory seeking and we have sensory aversion.
21:23And many of our autistic individuals will have a combination of both.
21:27So some cases they might be seeking sensory experiences, and then in some cases they might be pulling away.
21:33So it's, we have to be sensitive to that.
21:36The diagnosis itself is not, it's important for the individual insofar as it helps them get the care that they need and the interventions that they need, maybe in the school.
21:46But we should be using these interventions for everyone.
21:51My name is Jonathan Martinez.
21:54I'm the head of federal affairs over at Halion.
21:56We are a consumer over-the-counter company.
22:00We've known about neuro-inclusive needs and neurodivergent needs specifically for quite some time.
22:07Halion is using its platform, its products to help promote better outcomes for the neurosensitive community.
22:15We want to make sure that this community has a voice.
22:19Part of the problem that you have with the current system is that there isn't a specific requirement that we think about neuro-inclusivity in the classroom or neuro-inclusivity as part of a dental practice.
22:33Creating more inclusive sensory-friendly environments makes a meaningful difference.
22:38For the most part, I've been bullied out of workplaces.
22:51I've even been fired for no reason, and they've made up a reason.
22:54I've been fired because people said I was hostile, but they couldn't give an example.
22:59And I'm starting to think now that hostile means quietly doing your work and not talking to people.
23:05I've had some very strange experiences, and it's hard to talk to people about them because they don't believe me.
23:10But I realized later that neurodivergent people have these experiences, and they believe me and they understand them.
23:15But most people don't have these experiences because people don't treat them this way.
23:19It's something about being autistic or just behaving differently from them.
23:26Even if you're doing what you're paid to do, you're not misbehaving or anything.
23:31You're in trouble or they're upset or they're angry.
23:36I think the trauma is never going to go away.
23:38It's just always going to be a thing for me with jobs.
23:42I have dreams about it like every night.
23:44About getting fired.
23:48Because it can happen any day.
23:50In my experience.
23:53There doesn't have to be a reason, or there can be a made up reason.
23:58So at some point I stopped worrying so much about trying to fit into arbitrary social norms and just decided to be myself.
24:05And being myself is much less stressful.
24:08And I'm happier.
24:10I work doing quality assurance in a food manufacturing plant.
24:19I do a lot of FDA oversight and testing things.
24:24There's a sensory aspect of the work I do now.
24:27It makes that aspect very enjoyable to me.
24:31And it's important for me to enjoy the work that I'm doing.
24:38Well, it took me about a year, I think, to fully accept that I was safe at my job.
24:48I started working with Burnett since May of last year.
24:52So I've been knowing Burnett for about a year now.
24:55And Burnett is so open.
24:58Just speaking with Burnett throughout the year, I'm realizing, well, why do I believe certain things?
25:03It's like, was it just taught to me and it been put in my head as normal?
25:07Or is it just an actual belief system of mine?
25:10So it just kind of helped me grow as a person.
25:12My little cousin, he's actually autistic, too.
25:16Oh.
25:17But just seeing how you, like, persevere, it gave me, like, inspiration for my little cousin.
25:20Like, he can still go far.
25:23People are not, people's mindsets are changing.
25:26You're, like, legit one of the smartest people I've ever met.
25:31Well, thanks.
25:34Not everyone in my community can speak up for themselves.
25:37So when people see me in the workplace, that can change their minds.
25:41About what we're capable of.
25:44People have told me that I've inspired them and taught them things.
25:47Which surprised me.
25:49But I'm glad, because they helped me.
25:52And I like to think I'm giving back.
25:56I think it's really important to self-advocate.
26:00At Star Institute, we have an adult-specific program.
26:04We're supporting this population to be successful and thrive.
26:09And that includes finding employment and holding a job.
26:13And it can be really hard.
26:18For me, when I'm on a set, it's a sacred place.
26:24We're all here in front or behind the camera to do the best work we can.
26:29It's not a joke.
26:30This is some serious business.
26:35Where there's a great amount of concentration needs to be had.
26:40It has to be a setting where I can thrive.
26:44And film sets are very complex.
26:51But as a director, you want to make the actors feel comfortable.
26:56Then they do a job.
26:59And it's a hard job.
27:01And you have to concentrate.
27:03And if there's stuff going on in the sides that's breaking your concentration, then, you know, it's not helping.
27:16I realized that there was such a large gap between dentists and sensory-friendly dentists.
27:26And even one step above that, dentists who are sensory-friendly and can adapt how to actually provide dental care.
27:35So, in my office in Houston, I took half of the physical space and we redesigned it to be more sensory-friendly.
27:48There is nobody that goes into the dental office and goes,
27:51Man, this is my favorite place in the world.
27:54I love it.
27:55Hey, how you doing?
27:56Dr. Dent, very nice to meet you.
27:57Nice to meet you.
27:58Come on back.
27:59Let's go take a walk and get you into a room.
28:00We're going to go visit for a little bit before we get started.
28:02It doesn't matter if you're a neurotypical person.
28:06You still have sensitivities that need to be understood and need to be accepted and not viewed as just being a baby about it or just being overdramatic about it.
28:18Because some of those things can really cause someone a large amount of anxiety.
28:24And that anxiety can make people not go to the dentist.
28:29Tell me a little bit about what I can be of service for you today.
28:34What brings you in?
28:35A cleaning.
28:36A cleaning.
28:37Okay.
28:38When was the last time that you were at the dentist and had a cleaning?
28:41A few years.
28:42Okay.
28:43When I left dental school, I was a filling and restorative guy.
28:48You know, I had zero training on special needs.
28:52All I knew was from basically what I saw in the movies.
28:57So what I want to find out from you is what are those things that you're sensitive to?
29:02And then we're going to adjust our appointment to kind of fit around that.
29:06Okay.
29:07So let's just start with the basic five.
29:08So sights.
29:09You said, I don't like seeing the needle coming.
29:11Okay.
29:12So if that happens, is there any other sights that bother you?
29:15No.
29:16What about, what about taste?
29:19Like pumice makes me sick.
29:22Okay.
29:23So the things that we use to brush your teeth makes you sick.
29:25Okay.
29:26Is it, is it the texture of the pumice or is it the flavor that they use?
29:30Just the grittiness.
29:31Just the grit.
29:32Okay.
29:33So minimal to no grit.
29:35It would be better, in my opinion, if we had two forms, one health history, one sensitivity
29:45form.
29:46Check the boxes on, tell me what your preferences are, what you're hypersensitive to, and what
29:52would make this visit better for you.
29:55Can I put my headphones in?
29:56You're more than welcome to put your headphones on.
29:58Okay.
29:59Let's start right there at the top.
30:03The dentist is a really interesting one.
30:06And there's been some lovely research done on how to support sensory differences at the
30:10dentist.
30:11I personally cry every single time I go to the dentist.
30:16I am not emotionally upset, but cannot handle the sensory experience of being at the dentist.
30:29So, right before she goes under and right when she comes out, we need to make sure she's
30:36comfortable with things that are familiar to her.
30:42She loves this little fish.
30:49Put that in there.
30:51Then we have our old faithful here, Sharky.
30:54She's been using this since her first oral surgery.
30:58So, let's keep it consistent.
31:07Every year, because of Alero's sensory challenges, we take her on the pilgrimage.
31:13Good morning.
31:14Alero, are you ready to come back with me?
31:16You guys are ready?
31:17Good morning.
31:18Yeah.
31:19Do you guys have any concerns for her teeth at this time, in particular?
31:20How has she been doing with her home care?
31:21Are you guys still able to brush her well?
31:22Or is she being more resistant?
31:23How is she transitioning?
31:24How is she transitioning?
31:25We are having minimal toothpaste because she still struggles with my teeth.
31:27How is she doing with her home care?
31:28Are you guys still able to brush her well?
31:29Or is she being more resistant?
31:30How is she transitioning?
31:31We are having minimal toothpaste because she still struggles with rinsing and spitting out.
31:42Sometimes she seems to have some tooth pain.
31:44It goes in and out.
31:45So, we're not exactly sure to get rid of this hair.
31:47We're having minimal toothpaste because she still struggles with rinsing and spitting out.
31:53Sometimes she seems to have some tooth pain.
31:58tooth pain. It goes in and out, so we're not exactly sure. We think it might be tied to her
32:04chewies sometimes. So last time that we did her treatment in the hospital, I extracted several
32:09chewies from her teeth and her gums. So we are going to have to kind of collaborate and see if
32:17she'll accept like certain teething tools that would be more beneficial, that aren't going to
32:22leave like debris in her mouth. So now that she's transitioning into being a protein teenage
32:27major, she is going to have all of her permanent teeth. So we definitely want to make sure
32:32that we are focusing on her gum health, both at home and when she comes in for the yearly exams.
32:38Peace of mind is a form of wealth. So thank you for keeping us wealthy.
32:44Thank you. Sit down. All right. We're just sitting. We're just sitting and talking. We're friends.
32:51All right. Can I have the bracelets to give to mom? While she's under sedation, we do a full
32:57blood workup. An additional to her dental care, blood work would then be sent to our endocrinologist,
33:05to her allergy team, to her pediatrician, making sure that as she grows up, we can get that at least
33:15once a year blood work. So we can have somewhat of an idea of what's going on within her body.
33:21My hope is there's more of a push towards a holistic view of this from cradle to grave.
33:41I think we need to be better being inclusive and understanding that not everybody is going to
33:51have health care delivery in the exact same way.
33:58On any given day, our routine is very, very ritualistic. Ethan gets up in the morning,
34:05and he eats the same breakfast. He does the same routine because that's comfort zone for him.
34:13All right, ganglions. Can you reach that?
34:15We try to avoid high populated areas or areas that are very loud or kind of obnoxious because that does
34:25tend to trigger some of his sensitivities. There's a local arcade with pizza, and we always like to go, but we
34:37are very selective about the times that we go.
34:42Hey, when you need a refill, let dad know if you need more.
34:45Here are certain times where they make it more sensory friendly, and it gives us the opportunity as a family to go enjoy that because you don't want to keep them isolated just up in his room playing video games or watching movies.
34:50There are certain times where they make it more sensory friendly, and it gives us the opportunity as a family to go enjoy that because you don't want to keep them isolated just up in his room playing video games or watching movies.
35:15He needs that socialization, but if you can control the sensory environment for them, it's a whole lot better as far as the outcomes and how he desensitizes to environments that are not sensory friendly.
35:31All right, here it comes. Shoot him up. You got one. Good shot.
35:39Put it in there. Nice shot.
35:43Two more.
35:43Throw him up.
35:45One more.
35:48Nice. Good shot.
35:50Good job.
35:51Fantastic.
35:52All right. What do you want to play now?
35:54It's good to be inclusive where we can all do things as a family. We don't have to do separate activities.
36:00That really helps build that family base.
36:04There you are. You like it?
36:08Yeah.
36:08All right. Let's go play another game.
36:10You want to go do Space Invaders?
36:11Space Invaders.
36:12Space Invaders. That looks like a fun game. Let's go sit in Space Invaders.
36:22You want to play skee-ball?
36:23Skee-ball.
36:24All right.
36:24Yeah.
36:25Real hard, real hard. Real hard. Good job. Their sensory friendly hours really focus on some of the most common triggers, which are the loud noises from the games, the fluorescent lights.
36:45When they transition out of sensory friendly to just general public sights, sounds, everything, it creates a whole different level of anxiety in Ethan.
37:06We've learned him so well that when we start to sense that, it triggers our sensitivities and we are able to transfer him out of that situation.
37:23I think we have a tremendous mandate to unlearn the things that have become assumptions in the way that we do life.
37:42It's time to sort of be awake and intentional about embracing different ways, different ways of being human, different ways of experiencing the world, the wisdom of the body.
37:59What's the title that you can pull it out?
38:13Oh, that sounds fair.
38:14Yeah, industry ice cream.
38:15Okay.
38:17Oh.
38:17Okay, happy birthday.
38:18Happy birthday.
38:20How does it feel, BW8?
38:21Nothing feels different.
38:22Yeah.
38:22I feel more optimistic about 2038 because I won't see this.
38:34And even numbers are very good for me.
38:39Oh, that's cold in my teeth.
38:41Do you think you'll go back to the dentist this year?
38:44Yeah.
38:45I think I'm running out of his teeth, sis.
38:48I think I'm getting too old, so it's like irresponsible at this point.
38:52Yeah.
38:52So, yeah, I think I'm going to.
38:53Why don't you impose a deadline on yourself?
38:57Can you make one for me?
38:58A week from Monday.
39:00That way you have all week to do it.
39:03Like, I can help you because I can be at your computer with you.
39:06We can find a dentist together, and I can dial a number for you.
39:09Oh, okay.
39:10And you read the phone.
39:11That'll remove a lot of executive functioning for you.
39:14Yeah.
39:15Okay.
39:16Okay, that's a lot of the work.
39:17So, find a dentist a week from Monday.
39:18I think it's easy to justify reasons not to go.
39:23Yeah.
39:24I'll go in five years.
39:25Okay.
39:30That's 2029.
39:31I should make it round up and go to 2030.
39:35Yeah, you're just...
39:36Yeah, we're prolonging it.
39:37You're pushing it out.
39:38I've done this in 2030.
39:39Oh, okay.
39:40Don't you think you should go this year?
39:44Of course I should.
39:45Oh, okay.
39:46Of course I do.
39:47I'm a logical person.
39:49I'm not going to.
39:52I have an electric toothbrush.
39:54So, I'm...
39:56You just keep coming up with ways to rationalize not going.
40:01I got $750 of dental work done in 2013.
40:08That's more than a decade ago.
40:10I'm saying.
40:11And I haven't had any cavities since.
40:12Okay.
40:13So, I think that dental work was all I needed.
40:21I'm afraid to tell a dentist that I might be autistic.
40:24I don't know if they're going to get scared.
40:28And reactive.
40:31I expect them to have a bunch of stereotypes and misrepresentations that I don't even understand.
40:41Like, this person's going to bite me.
40:43I expect them to just be afraid of me and...
40:45Or not take me serious.
40:47I'm pretty cynical about it.
40:49I kind of just don't want to go to the dentist until I'm in really bad pain.
40:52But I need to stop thinking that way.
40:53I think that there's a tremendous amount of work to get to a place where we're all sensory informed and sensory health is prioritized.
41:05That we're supporting people to feel and sense the world in the best way for their brain and body to be well and flourish.
41:17A big bulk of the work is about unlearning and change.
41:24I didn't have a purpose in dentistry other than being Dr. Dent.
41:40And then when I had Ethan, I found purpose.
41:43Please help me welcome Dr. Jacob Dent.
41:47Appreciate it.
41:49Yes, sir.
41:50All right.
41:51So our goal today is going to be to really focus on the basics of sensory issues.
41:57And I just want you all to be thinking kind of that outside the box.
42:01Like, what can we do that is not the standardized dentistry?
42:06I want to leave a legacy that's different than just being a traditional dentist.
42:12Why is it so hard for us as dentists and hygienists and providers to see special needs patients?
42:21I use the acronym TIM.
42:23Time, ignorance, money.
42:26Having the platform of being able to go teach continuing education classes,
42:31it really gives me a little bit more of a podium to speak to because I can talk to it from both angles.
42:39I can talk to it as a parent.
42:41I can talk to it as a doctor.
42:43And everybody has a heart.
42:45I truly believe that.
42:46There is nobody that I've ever come across that says,
42:49I'm not going to treat this population because they are disabled or because they're different.
42:56What they're going to tell me is, I don't know what I'm doing.
42:59That's why I'm here.
43:01I've been on a 20-year residency with my son, you know, trying to figure out autism,
43:06trying to figure out sensory issues.
43:08And that's not, it's not an easy class.
43:12So my whole reason for doing it is to show them that here's the model that I've done.
43:17Here's how I've been successful doing it.
43:19If anybody has any questions in regards to the kids or how to build a sensory room, just let me know, okay?
43:26I hope y'all have a good rest of y'all's conference.
43:28We'll see y'all next time, okay?
43:31My goal at the end of my classes is that one person will take the lead and start to incorporate that into their practice
43:40because there will be a day that I'm not here.
43:43And there will be a day that Ethan needs another dentist that isn't dad.
43:47And the hope is one of those people that I taught was inspired enough to be able to open their doors to my son
43:54and continue his health care well after I'm gone.
43:58So my biggest fear is that we're not acting quickly enough to take into account the neuro-inclusive community's needs.
44:06How do we make that experience a little bit more pleasant?
44:09And to the credit of doctors and dentists, they try.
44:12Should they have more resources?
44:14Yes.
44:15Should we make sure that there are more options available so that we can make dentistry a little bit more new and inclusive?
44:22Absolutely.
44:23There are two conversations here.
44:25The first is making sure that the health care system is more inclusive.
44:28But then the second is how do we think about making sure that patients and providers are able to meet each other where they're at,
44:35regardless of someone identifying as neurodiverse.
44:55Burnett, I'm going to go ahead and have you fill out some forms for me.
44:58And then you can have a seat in the waiting room, fill these out, and bring them back up to me when you're finished.
45:02All right, thank you.
45:03When I first walked in, I said in the waiting area, I was overwhelmed.
45:09I knew I should be there, but my anxiety was telling me that I wasn't supposed to be there.
45:16How do you feel about your appointment?
45:19Oh, not very well. Anxious.
45:22When I brought my sibling with me, we helped each other when we went to the office.
45:28This would be less likely to miss the appointment or to leave or anything.
45:33If someone else is with you, it would take a lot of pressure off.
45:38Which I guess is just the pressure is just the negative self-talk.
45:44Burnett?
45:45Yeah.
45:45Are you ready?
45:46Hey.
45:47How are you today?
45:48Good, how are you?
45:48Well, thank you.
45:49This way.
45:51And we're going to step over here.
45:54And then right in this room right here.
45:56And you can have a seat right here.
45:57Okay.
45:57Okay.
45:57How long has it been for you since you've had your teeth cleaned?
46:06Um, about three years.
46:09Oh, that's not bad.
46:11Do you have any teeth that are bothering you?
46:13Yeah, a few.
46:14A few?
46:14Okay.
46:14Can you lower the lights?
46:23Did you bring your own sunglasses or would you like to wear these?
46:26Oh, I left mine in the car.
46:27I'll wear those.
46:27You'll wear those?
46:28Okay.
46:28I'll take your glasses if you'd like.
46:30Okay.
46:32All right.
46:33So thank you.
46:33Thanks.
46:36All right.
46:37Okay.
46:38I'm going to put in my lips.
46:39Okay.
46:39I calmed down not too long after being there because of all the natural lighting.
46:47That was immediately calming, surprisingly calming.
46:53I'm going to use this bright light on my head.
46:59And open and turn towards me a little bit.
47:02Bye.
47:09It's important to go into spaces to help people learn how to become better allies if we're
47:18to create a more inclusive world.
47:21All right.
47:23Everything looks good for me.
47:24Go ahead.
47:26Now I'll go get the doctor and she'll come in and do your exam.
47:29Would you like to sit up while you wait?
47:31Sure.
47:31Okay.
47:31I think we have to start normalizing the accommodations and the different environments rather than trying
47:42to normalize people.
47:44And I would love our sensory spaces and our low sensory spaces to be more mainstream.
47:54We don't bat an eyelid at using them.
47:58There's more of them.
48:01Our daughter, Alero, loves water.
48:08Water is one of her favorite places to be.
48:13But that is buttressed against the fact she has to be around a lot of people.
48:18So there's a conflict there.
48:20Gee.
48:21Do this, do it.
48:26Alero.
48:27Ready to go?
48:28Alero's perfect scenario is a giant pool secluded.
48:35Nobody's there.
48:39The work I do is because we need inclusive space.
48:44I see the impact because when you have them, things are better for everyone.
48:50Including Alero and Fela.
48:58At a public place like a pool, you do see the reaction in her body.
49:04I could sense there was a bit of hesitation on her part.
49:19So a couple of things I tried to run through.
49:21One being, okay, daddy's going to go in.
49:24It's safe.
49:26Daddy's having fun.
49:27Can you come join me?
49:28That didn't work.
49:34Come on, Alero.
49:35Only takes his wand.
49:38Another thing I tried was more verbal cues.
49:42You know, come.
49:43Come to daddy.
49:44Hold my hand.
49:46I'll catch you.
49:47And it almost worked.
49:48You know, you could see her rocking a little bit, trying to lean in, trying to decide if
49:54she was going to jump into the pool.
50:00The final thing that actually did work was literally walk her to the step-down part of
50:07the pool, where she could enter the environment a little bit at a time, right?
50:15So she stepped literally one foot in, walk back out, step two feet in, walk back out.
50:32Step three feet in.
50:33Step three feet in, walk back out, and finally decided it was worth taking the plunge.
50:51All of that to 45 minutes before she actually got in.
50:57And once you got her in, she had a blast.
50:59Step three feet in.
51:03Allero in the water is Allero truly at one of her happiest places.
51:16I would say water, music, and jumping all bring out a version of Allero that's highly playful,
51:26beautiful, that loves life, that loves the people around her.
51:32She laughs more than she normally would.
51:35It's, it truly is her happy place.
51:37It's like when people come alive, when they write, or when they, you know, speak in public,
51:43when they paint, when, that's how Allero comes alive in those situations.
51:47In the span of, of an afternoon, we saw both sides.
51:55We saw sensory overload, and then we saw genuine joy.
51:58The beauty of love is the humanity in it.
52:07And humanity is both beautiful and not so beautiful at times.
52:12And when you look at the totality of it and the level of authenticity that I now live in,
52:19I do love my life.
52:21And I don't know if I would have said that five years ago, but I have embraced it all.
52:28I listened to my aunt.
52:29I acted like I went to the store and I bought it.
52:32And do I cry sometimes?
52:34Absolutely.
52:35But I cry and I still move forward.
52:37I hope that people who watch this see families like mine as not some societal problem to fix.
52:54I hope they genuinely see our humanity.
52:59That's what I hope.
53:00And that's why we do what we do.
53:07I want to thank you for doing this documentary because not that many people really understand what dyslexia is.
53:36And, you know, or might even know what people are.
53:40It's selected.
53:41And knowledge is powerful.
53:59So,