matt crawford interviews Eric Garcia on new book: changing the autism conversation

In this interview Matt Crawford speaks with author Eric Garcia about his book

We’re Not Broken. Autism is such a complex disorder with many gradations and too many of us know little about it and how it affects the people who live with it. Garcia brings his own personal experience, living and working with Autism as a journalist to help us

better understand it. We discuss the myths behind Autism, the social and policy gaps that leave those in need of treatment wanting and how we can all better support those people that need our help the most. Autism is difficult to understand for those who have it and their relatives, imagine trying to understand it when you are removed from its effects. Garcia bridges that gap and shows us the way.

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Matt Crawford 0:01

Hello, and welcome to the curious man's podcast. I'm your host, Matt Crawford. And I am the curious man. I started this show to ask experts and authors. Questions I like the answers to, if you'd like answers as well, I invite you to join the show. Remember, a day where nothing is learned is a day wasted.

Eric Garcia 0:24

Today, we are speaking with journalist and author Eric Garcia about his book where not broken changing the autism conversation. Eric Garcia, welcome to the curious man's podcast. How are you today?

How you doing? I'm doing well. I'm excited to have you on we're here to discuss your book, where not broken changed in the autism conversation. And my first question for you, sir, would be what made you want to write this book.

Unknown Speaker 0:49

Um, this goes back to party, Washington, DC. Back in 2015, I was at a party. Guy offered me a drink and said, Hold on, I just want to make sure is there any background noise? You're fine. Okay, the that somebody mentioned. So I can't drink because I'm on a spectrum and a medicine, it can't really mix with alcohol. And he's like, oh, there's a lot of autistic people in DC, you should write a book about it, or you should write you should write an article about that. And I was like, yeah, you know, maybe when I get good at being a journalist, I was really new in my career. I was like, 24, at the time, I was like, I'll do that. Then, I was working at a magazine called National Journal at the time. And the presentation of the magazine was to go under. So my editor, the editor of literature just said, You know, I want to have kind of his bold and artists this one, because pitch me something. And I was working for the website at the time. So I pitched this idea about kind of a fun talk of the town kind of piece about what it's like to be autistic in DC and product. And then he kind of gave me a good thing, which he was like, Well, why do you want to write this piece? And I was like, Well, I think we focus too much on trying to cure autistic people and not enough on trying to help them live fulfilling lives. Like there's a piece right there. So that is, like 6500 words. And that led to another to a larger, you know, one of the some people will probably remember reading that book. And around that time. This is around 2015. I don't know if you remember. And so I grew up in California. I grew up in Southern California. And I remember around that time, if you remember, there was a measles outbreak. Like from people at Disneyland, remember? Yeah. And because people work, you're getting measles because they weren't vaccinating their kids because they were afraid of office. And of course, that's BS. You know, that's, we should we should put that out there. That's completely false. That's a lie. That's a myth. And then what also happened is I'm political journalists by day, you know, and Donald Trump was beginning to run for president, and also the lead in the polls. And he was promoting misinformation about vaccines and autism and things like that. And since somewhere along the line, I thought to myself, wow, there are here are a bunch of California, it's a bunch of liberal hippies. And in New York, I mean, or I should say, you know, with Donald Trump, he's running to be the Republican nominee for president, so would have saved me was somewhere along the line. We both have really unknowable sides. But I would say I don't think both sides are equally to blame. But for some reason, the political discourse around autism and folk had become solely focus. The questions began and ad ended when it comes to autism. The questions begin ended at does vaccines call, do vaccines cause autism, and that is wholly removed from the concerns of autistic people. It doesn't help autistic people who are looking for work, or in college, who want to live independently or live with their could live in the community. It doesn't help artists and people who are living in poverty, or who've gone through horrible conditions in their schools. It doesn't fix the problems. So that led me to ask this question, well, what did we get wrong in our discussions about autism? And then what can we do to make a more equitable society for autistic people and that's really what this book was about.

Eric Garcia 4:52

So I think for so many of us, and as you pointed out, that that Congress And that, you know, theory conspiracy theory about vaccines causing autism take a lot of the oxygen out of the room and kind of even kind of sours people's appetite to even go further and try to understand the complexity of this disorder.

Unknown Speaker 5:24

Yes, absolutely. So what happened is, and this goes to, I think, the larger problem with autism, which is that for years, it was misunderstood for multiple reasons. Ebola vaccine thing, it was, you know, the original Hold on, initially, it was seen as a you know, it was seen as a form of schizophrenia. Initially, it appeared on autism doesn't get its own separate diagnosis, separate from schizophrenia in the DSM, which is the Diagnostic and Statistical Manual of Mental Disorders until 1980. And it was distinct. The first studies about it were put out in 1943. The first time it was used in you know, in research was in 1911. So that's give or take 69 years of autism being seen as in the same categories schizophrenia. And at the same time, for a long time from, you know, we thought that autism was or a lot of researchers like Bruno Bettelheim are perpetuated the idea that autism was caused by our loving parents. They were called refrigerator mothers. And then it wasn't until the 1980s that it's a separate diagnosis in the DSM, the DSM three. It isn't until things like infantile autism are included. And pervasive developmental disorder not otherwise specified, and Asperger syndrome are included. And as a result, because it was seen as a form of childhood psychosis, it was not seen as a disability. So it was not included in the larger push for Disability Rights, so to speak, that was happening in the 1970s and the 1980s. And it will be, you know, things like that. So that was it. So Incidentally, you know, in 1990 when Congress reauthorized the Individuals with Disabilities Education Act? Well, it was, it was initially the education for handicapped children act. It wasn't until it was reauthorized in 1990, that autism was included in there. And there was a report that said that on the legislation that says Autism is software from a historic and historically accurate identification with mental illness. And that including autism in the ITA meant that autism was definitively meant to establish autism definitively as a developmental disability, and not a form of mental illness. So for a long time, we just misunderstood it. And as a result, we've not really come up with good solutions to help autistic people. That's a long winded answer. But yeah, I love

Eric Garcia 8:15

the nuance, because that's why we have this show to dive into it. Because the main issue here is, you know, if you listen to people, and again, this is anecdotal, but I think everyone has had conversations. And I was born in 1976. Anyone my age when you talk about autism, the reason why there seems to, you know, be some type of reasonable idea about Okay, maybe there, I could see how maybe, all of these vaccines, yeah, maybe there's some correlation there is because everyone says, you know, when I was younger, we had maybe one kid in the school who had autism. Yeah. Now, these kids, they're all over the place. Why? Why all of a sudden, and as you point out, because when number one we didn't know about it, it wasn't given its own diagnosis. And it till 1980. Well, you didn't hear about it, because they just started to even have the basic idea how to handle it. In 1980.

Unknown Speaker 9:18

Yeah, yeah, like, so that happens. The other important thing to happen that happened is, you know, it's, you mentioned it at work. And on top of that, infantile autism. It was up until then, you know, of course, we had things like Asperger syndrome, like I said, PDD and ALS. And then in 2013, you have basically all of these kind of these kind of terms pulled under the same umbrella on autistic Autism Spectrum Disorder. So that leads and then what also happens is that, as I mentioned, while the Individuals with Disabilities Education Act, I'm going to keep coming back to it or Ida what it did is that it mandated that students with disabilities are provided with a free appropriate public education. And what happened is now that autism was specifically included with that, that meant that schools had to report the number of autistic students they serve to the US Department of Education. So what happened then, is you saw, boom, a large increase in the number of kids who are being diagnosed, because they were the federal government mandated that schools get this data, and they had to get that. So a, we're getting better at it. And B, schools that receive taxpayer dollars by law had to report the numbers they were receiving. But before that, they didn't need to receive a need to, they didn't need to report it. So naturally, you're going to have an increase.

Eric Garcia 10:50

Now, I think the other important thing that we need to discuss the simple fact of autism gets paint or painted also with a very broad brush. So yes, a lot of people who do not take the time to do any type of reading on this material, or try to understand that there are many different facets to this disorder. And because of that, it has this stigma where a lot of people, oh, well, yeah, this is, as you point out the refrigerator mother, right? Well, I have a cure and watch your kid discipline your child, don't let your child just spout off do this, do that. I mean, if these parents were like the parents back in the day, we wouldn't have these issues. This is because yeah, but so yeah. How varied is autism.

Unknown Speaker 11:39

So there's an analogy that I heard really well, which is, for a long time, we thought we talked about autism spectrum disorder, we kind of tend to think of it as a continuum as like, it's like you're a little autistic, or you're a little more autistic, or you're a little less autistic. There was a better analogy I heard, I think he was on tik tok, or Instagram or something, or, you know, but it said that it's more like a color wheel, which used to see that there's different variations in different gradations. So one of the things that's important to recognize is that a lot of people would probably say, I'm sure there's some people who are just going to listen to your podcast now, we're gonna say, Oh, well, Eric, he's only a little autistic, you know. Because I get that a lot. I know, you're gonna say, Well, you know, somebody who can't speak, or somebody who has an intellectual disability, or someone who requires around the cleft care, they're more autistic, or they're really autistic. And I don't think that's a really good, they call them low functioning autistic. And I don't think that's really a good barometer. Um, because what it does is it erases those real difficulties. Pardon me, the autistic people, like myself thinks and be wanted to, if you call me high functioning, and what it does, and I think this is just as important is it flattens experiences and lowers expectations for non speaking autistic people who need around the clock care, who need who need, who might, you know, live at home or who might require, you know, have, like I said, having a home care aide or things like that, it lowers those expectations and says, oh, for so for example, it says, like, you know, if you say that they're low functioning, then it gives the rationale to your shock therapy on that, because they're gonna do harm to themselves. Oh, well, they're low functioning, you know what I mean. And, you know, there was a court ruling this week that said that the FDA could not ban the use of shock treatment on autistic people. And it's also the rationale that's used to say, to, for example, pay autistic people less than minimum wage. A lot of autistic people and a lot of people with intellectual disabilities across the country are still paid below minimum wage. And it's in the law, that they're allowed to do this, that business can do this. So I tend to think that it's important to recognize on one hand that autism exists. Autism is different as all the autistic people who live in, you know, other it's important to recognize that their experiences, it's impossible to label their experiences as high functioning, or low functioning, because what you ultimately end up doing is you end up not helping the people who you would consider high functioning, and you ultimately wind up hindering People who you would consider a low functioning, I think,

Eric Garcia 15:03

I mean, it is a very tricky disorder to understand, especially for someone who, you know, let's be honest, unless someone has a relative or friend who has autism, most people have busy lives, and they worry about the things that impact them. If there's no impact there, they will not put the time in. And this is just a very difficult and complicated disorder to understand.

Unknown Speaker 15:37

Yeah. So like, on one hand, I completely get that it's a lot of work, you know, we're all working hard life is hard. On the other, what I would say is roughly 150 kids, according to the CDC, you know, has autism, or is autistic, you know, or 155, or whatever, you know, depending on what you read, depending on the latest. So the chances are, and none of about 1%, or two to 2% of the population of adults, we don't really No, those are really hard numbers. So the chances are, you know, somebody who's autistic. But you're you're got

Eric Garcia 16:21

that, but that that is it. Right? So it is very wide ranging, but for a lot of people, because they don't recognize just the default grade, the different gradations of autism may not even realize that that's the thing, right? I mean, they probably do know someone, but they might not even realize it.

Unknown Speaker 16:45

Yeah, that was that was kind of the thing that I was really, I was talking with a lot of people that square the company, because they have an autism employee resource group. And one of the things that they're saying is they would love to start a hiring issue. But what they were also saying is, let's work on, you know, including the autistic people here, because and then like, one of the ways that it came down was that one guy, Chris internetowe, was wearing a shirt for autism acceptance. And another guy, Chris Williams, said, Hey, I'm autistic. And, you know, he didn't know, you know, the other guy didn't know, you know, and let's talk about the book. So like, there are autistic people, and almost every workspace, there are probably some in some sector more in some sectors more than others. Because chances are, you know, you have a neighbor, if you have a co worker, if you have a, if you know somebody, you know, there's a chance. You know, like I said, it's one in 50 people, there's a chance that you know, somebody who's autistic. So that is, so I think that like you said, as he said, it's important to recognize that that because it's on such a continuum, you might know somebody who's autistic and not even, you know,

Eric Garcia 18:02

I believe also we have this mindset to that, you know, autistic people, they grow out of it. So a lot of people believe that, you know, well, you know, how many autistic grownups Do you know?

Unknown Speaker 18:17

Yeah, so that is really, really interesting. And to your into your point, it's interesting, because with Temple Grandin, when her book emergence came out, sorry, I dropped my phone in the middle of like, when her book came out, her memoir emerged in 1986. She was touted as a hope and inspiration because she was seen as a cured autistic girl horribly autistic person, you know, she'll tell you, she's still alive, that I'm still autistic, that didn't change, you know, I didn't stop being autistic once I turned 18. You know, I similarly, I think a lot of there's a flip side to this. A lot of parents have subjected their children to different types of treatments. way for that, and the a lot of parents have to subjected their children to treatments to make their kids not seen as autistic. So they put them through ABA or they make them stop flapping their hands or stop, you know, doing what's called self stimulate self stimulatory Tory activity, what's called stimming or jumping up and down or, you know, making eye contact. So, they it's almost, you know, it's it's conversion therapy is what it is. So when they say oh my kids no longer autistic, not really more than anything, they just been conditioned to behave You know, typically, but they're still autistic. And on top of that, it's really screwed up because they had to suppress who they are. So like the ACL, it's funny, because it's like, the idea that they're not autistic anymore is ridiculous. And then conversely, a lot of them, a lot of autistic people who do grow up, who can't, you know, quote, unquote, pass, they wind up in institutional settings, or they went up in nursing homes, and they wind up somewhere else, you know, so, so like, you know, it's not that it's not that you don't see growing up. Growing up autistic people don't exist, it's that you don't see them anymore. Oftentimes, because either a, they've been forced to go through really bad kind of conditioning training, or their we literally don't see them because they're out of sight. They're in institutional settings.

Eric Garcia 20:51

So let me ask you this, because, again, you do have issues where and perfect example, I belong to a Swim Club, and there is a young man there who has autism, he stims, quite often he is not very verbal. And he's grown up to be about six foot six. And all he wants to do is play with his two wrestling action figures, but he wants to stand in the middle of the playground, and make loud noises and self stem. And for a lot of people, they are nervous, because you see a large person, you see them screaming, you see them waving their hands. So for a lot of people, they're off put, right, and they don't yet want to have a conversation. So would that be something? Do you think that? I mean, you don't want to say anything to the parents? Because you feel like, Oh, these poor parents, they have to deal with a child who has this disorder. But that is not obviously how we should feel. That is not how we should come at that is that issue with the parents? Would it be best to have a conversation with them if you are concerned? Because some parents, they'd be concerned because you have this large individual by their young children? They don't know. They don't know who he is. They don't know what he's capable of. They don't know what his issues are. Right? So then you just get this wall, kind of, of just judgment around this child.

Unknown Speaker 22:18

Right. So like, I mean, I think one of the things that's important to recognize is that that person who wants to standard out on the playground, that person still has dignity, and the family, his family has dignity, his parents have dignity. He has dignity. And I can see how that can scare people. But on top of that, what you need to recognize us that that, is that more learn more than judgment, what we need to understand is, well, why did they react this way? What is it about the environment that makes them swing? or Why? Or what are they trying to say? What are they trying to do to express themselves? That's communication? All right. Yeah. Yeah. Cuz like, what are the most important things, one of the things that's fascinating is that a lot of autistic people who can't speak, they are, you know, immediately because they, they can't use their mouths, a lot of times, they're if they're misunderstood. And then, but then when they get a communication device or a keypad, then you know, they can communicate perfectly. They don't use their voice, but they can tie, you know, but you know, more than anything, what needs to happen is like, I think I can understand people being nervous and people are people are afraid of what, what they don't understand. And you don't want to assume anything. You don't want to assume anything. But like, at the same time, you need to understand like, that person deserves respected more than judging, then I think what we need to understand is, well, how do we make this place adaptable and accessible, so that this isn't an overwhelming environment? And to think about, why do why is that, you know, if you think about what you said, is stunning. what's what's stunning, ultimately, it's calming yourself down, or making sure you're stimulated enough. That must be that there's an environment there that's causing him to be overwhelmed or to be underwhelmed. You know, and what do we do to make sure that that person has a fulfilling life? And at what do we do to make sure that that person feels welcome and included? And I think that's going to be I think that's the really the most important question. When you see these incidents, we see these, when you see these, when there are incidents of people, like parents having their kids out in public, even their growth or their grown offspring out in public. How do they how do how to, you know, how do they ensure that they don't make other people feel uncomfortable, but also, what's the responsibility of everybody around them to make sure that this person is comfortable, you know,

Eric Garcia 24:54

I mean, that's the thing you know, you don't, you know, because we're there and you're thinking, well, I don't want to Ask the parents because I don't want to embarrass them. You don't know what to say. But maybe by having that conversation, as you're saying, we could understand what that young man feels, you know, and maybe he's enjoying the fact that standing on top of the monkey bars with his wrestling action figures for him, that he's enjoying himself. Maybe that is Yeah, right. So okay, we're all good. He's having a good time. We know that he's not stressed. And then we can understand better, you know, I mean, again, you don't want to give them the third degree. But I think maybe if you had those conversations, you know, hey, what's your son's name? You know, do you mind me asking? Does he have a diagnosis? What, what? Things set him off? What does he like? What do you what do you know? What's his name? What does he like? What doesn't he like? What things set him off? Then you have a conversation, you understand what that person is going through?

Unknown Speaker 25:54

Yeah, absolutely. I mean, I think one of the most interesting things that I've ever it's one of most interesting conversations I've had with a gentleman, Ron Hampton, who I talk about in the book. He is a African American. And he's a former police officer in Washington, DC, where I live. And his son is autistic. And he said, when there's an incident with one of our kids, we know not to call the police. Because we know that, you know, there's a lot of misunderstanding around there. And I'll think that a lot of times, you know, I think a lot of people when they're allowed to they might see an adult person waving their arms around. The first instinct might be to do that. But I think what's better, what I think might actually be more helpful. Is acquainting people with autism, acquainting people with families, letting them know what's going on? And what are the signs that someone's either enjoying themselves, or whether they are distressed? You know? And where, and what can be done to fix it, so that it doesn't end with a misunderstanding? Or, you know, people's feelings hurt people getting physically hurt, you know, either the person who is autistic or another or another person, or, or how do you not get invoked at the authorities involved, where things can get even worse? So like, once again, it requires, I think what it requires is it requires empathy. And it requires a willingness to approach it, because the ultimate thing, like you said, is that it's really easy to pass judgment on it, because we don't understand a lot. Even I don't understand, like you'd say, Oh, well, I wrote a whole book on it. I still don't understand a lot of things on autos, I'm still trying to learn more.

Eric Garcia 27:39

For you, Eric, growing up, what was it like? And what was your diagnosis? What, what things do you mean, did you struggle with the most.

Unknown Speaker 27:50

So this is really, really interesting, because I got diagnosed, I was born in 1990, when all this stuff was changing, got the diagnostic criteria of policies, education, all that. So it was funny, because it was kind of like riding a plane that was still being assembled. Like that. It's so so what's funny is that we were going to my family who's going along with the stuff with the, with the paradigms as they were shifting, which is really interesting. So the first kind of examination that I had was when I was like three or four before preschool, or kindergarten. And they knew that I had something but they didn't know what it was because like that was when they were still figuring out what Asperger's was and what they were figuring out what, what autism was and things like that. And then it wasn't until I was like eight or not seven or eight that like I got the full diagnosis. We were living in Texas at the time. But, you know, so it's really weird, because like, we were getting the paperwork as they were learning. But as far as what it was, like, I think one of the things it's really weird, you know, somebody, my friend and Remi Hugo, who I interviewed for the book, they told me that you know, they say that autism is always a rhetorical condition, which is to say it exists in alien how we tell the stories about each other. It's the stories that because it's something you're born with, the way you learn about your autistic is your parents think all we knew things were different because you know, you want to respond to me talking to you, or you want to make eye contact, things like that. So it's really, but like, you don't know that because you're a kid, you know, you feel that you know and you don't know anything else. It's hard for me to say what was it like growing up autistic because I don't know what it was like to grow up anywhere else. But what I can say is how the world treats you. And I think that you don't know, if you even if you don't know the exact word for autism, you do know what it's like to be an outsider. And you do know that the world is looking at you and really looking at you and treating you differently than it treats the other kids, right. And as a result, what you realize is you realize, so all you know, is I'm different. I'm not being invited to parties, or I'm not being invited to play with the kids on the schoolyard. And that turns of not getting invited to parties in high school or things like that. But you don't really know how to describe it, you don't really have the words to say it. It wasn't until I started doing more reading into autism when I was in my teens and in my 20s that I was like, Oh, this makes sense, you know, but it's really hard to say about what it's like growing up, because it's like, you don't you don't have a word for it. If you did have working language for it, that doesn't change the fact that you still feel really isolated.

Eric Garcia 31:17

You know, I'm glad that you said, You're still learning about autism, because I have two children who were both diagnosed with PDD. Yeah, they both stem. And they, before they were diagnosed, they were stemming. So and I didn't know why they were stemming all I know, Eric was, well, they stem. And when I was younger, I stemmed. So then they get diagnosed with PDD. And then I'm going, wait a second.

Unknown Speaker 31:53

I'm starting to see a connection here. Yeah, like, Yeah. Like, there's so many times where I talk with parents, I get to talk with a lot of parents who want the best for their kids. And they're like, Hey, you know, they're like, Well, nobody else in my family was autistic. And I was like, but I'm like, Oh, you know, I was like, Well, you know, I was like, you notice they said they flap their hands? And they do? And they're like, Oh, well, everybody in our family did that. And like, you're so close to getting that like, this could be a you know, you might want to, you might want to do that you might want to do the homework, or you might want to see if two plus two equals four. Yeah. Yeah. So like, you know, it's funny how we talk about autism is that, you know, it's interesting, because like, if you do any kind of because it's a genetic condition, because it's passed through family, the chances are, you can do your family tree, and there's chances that you'll find somebody in the family. So like, I have a lot of cousins who are ADHD or add, and like, when it when I started doing this stuff, I was like, Oh, that makes complete sense, you know? So, so yeah, it makes, it makes so so yeah, like, it's fascinating how we talk about it, how we talk about it within our families, and how we talk about it with ourselves? And how about we how we talk about it to ourselves, you know, is I think it's just as important as anything else? Well,

Eric Garcia 33:34

again, so living with two children who have PDD, who on the spectrum, and then obviously realizing, hey, I'm not fourth, you know, that Apple wasn't far from the tree here. But when I read your book, and very early on one of the first lines that really stopped me in my tracks you write in the book, Around this time, I was working on a major essay that would serve as the basis for this book, in which I argued that society should stop trying to cure autistic people, and instead, help autistic people live fulfilling lives. And, you know, you mentioned that, you know, the advertisements and with Aerosmith, saying things that we want to wipe out autism, and I never really understood or even thought, to think about how that would make a person who has autism feel.

Unknown Speaker 34:31

Yeah, I didn't think about it either. You know, and I write about my phone. So like, you know, I grew up so like I was a teenager when autism kind of started entering the public conversation when Autism Speaks, launched and when, but, you know, you know, there was a lot of nonprofits started about autism, and there were a lot of, you know, charities charity balls, and celebrities started talking about it and things like that. And it was funny because initially, I was Like, I can know that I have some kind of autism. And initially, I was like, oh, cool, they see me, you know, and I think the most important thing when you're, especially when you're, when you're a kid, you're doing like, nobody gets it. You just want to be seen because you feel invisible. And then now I think about it, I'm thinking, Well, what did that do to me to think like that I needed to be cured. So, you know, that, that that, like that change? So like, like, now I go back? And I think about it, I'm like, how did that affect me? How did that affect other people? And how does it affect people today? What in what ways does that shit? You know? In what ways does that change my own psyche? How did that change how I viewed myself out of that change? How I viewed other autistic people? How about zones, how I related to non autistic people? And how I related to, you know, those are things that I still think about today. And I, you know, I spend a lot of time trying to think, well, what did I learn from them? And how did I and how do I unlearn that? You know,

Eric Garcia 36:21

I would say that in the past 15 years, the because I live in New York City, the public school system has advanced in leaps and bounds in the way in which children are diagnosed. And then the treatment that they get both of my children had a para public school, which was fantastic. So that's, for those listening who may or may not know who that is, but it's basically stands for power professional, it's essentially like a teacher's aide that is, you know, basically designated to your child, and they follow them around and make sure that they stay on task. If your child also has any type of food allergies, which one of my son's had as well, they make sure that they don't eat something they shouldn't eat. So all of that, yeah, right. So that has been leaps and bounds just increased and been so very helpful, because now you have someone there who's specifically making sure that your child number one may not you know, is getting the attention that they need, but also that if there is a distraction, they can kind of monitor that and make sure that they're not being overwhelmed with certain things that set them off. But how is autism? How does the diagnosis of that vary in socioeconomic and walshaw? across racial lines? Is there a large disparity there?

Unknown Speaker 37:49

So there is a very, very big disparity. I think one of the interesting things is that one of the early studies that came out about autism, and Sperry showed that you have basically identical apples to apples, black children getting diagnosed later than black children and white children on Medicaid. So understand this is apples to apples, Medicaid Sirs, basically saying because it shows the people which is both disabled people, and you know, low income people, they're still getting diabetics, they were still getting diagnosed later, that gap is narrowing. You know, and that's an improvement, of course, but it's not what needs to be done. Also, the other thing that's important to remember is that black and Latino children often get diagnosed with get misdiagnosed, with things like behavioral disorders, or things like oppositional defiant syndrome. So they still get so they do that. But then also, it's important to remember that girls get that mis diagnosed a lot, or they don't get diagnosed at all. And you mentioned the services that you get for your kids get that, you know, you mentioned how good they are. Imagine if your kids didn't get those services because they were misdiagnosed or not diagnosed at all. Or they were given a diagnosis of a behavioral problem or something like that. That is very much what goes on. And plenty of kids. You know, they're you know, I'll give you another example is that guy interviewed in the book is AJ link, a great guy. He's a law he was, you know, he's that he graduated law school since I interviewed but he got diagnosed with autism. When he was he was in college. You know, he's African American. And he's great. You know, he, you know, he was a he was a George Washington University graduate from George Washington University Law School. So he's clearly smart. And he's clearly good at what he is clearly, you know, amazing. But there was that gap and that prevented him from succeeding much earlier than he could have probably and that is story that repeats itself over and over and over again, not to mention, the other thing that's important to remember is that it costs a lot of money to get, I'm sure, you can attest to the money to get the diagnosis. And it costs even more money if you're an adult, and you want to get a diagnosis. So those costs can be prohibitive. It's really easy, I think, for someone like me to say, you know, oh, go get a diagnosis. I'm like, you know, a lot of times it's like, Okay, well, how do you, you know, where can we spare that? $2,000? Yeah, you know, you know, the referrals, we get the second referral, that, you know,

Eric Garcia 40:46

you also have so many parents, and I will say, right here, and now that I was definitely one of them with that mentality, if not from my wife, who was just on top of this from the very getgo. Now as a right, that, you know, you gotta let them come into themselves when they get a little older, right. Yeah. So that's something that you have to compete with is Huawei. You look at all right, just give it till night, you know, nah, but it's some of they'll be fine.

Unknown Speaker 41:18

But you know what I mean? Yeah. Yeah. I mean, yeah, I mean, that's, that's, that's also, you know, the cultural differences amongst different cultures, black, Latino, Asian American, so many of them, it's because those cultural differences, or they don't necessarily catch them in the same way that parents that way, turns do a lot of times, we overlook, girls, because if you're quiet, if you're, you're quiet, and you're subdued for girls, that's just seen as, Oh, you're a quiet girl, like, it's not seen, as you know. Whereas, you know, like, you know, for boys, if you're not very loud and boisterous, you know, then you're not that, then that's when people are like, oh, what the hell's going on here? Then you get the whole thing. So to your point, it's like, it's what our expectations are, that often lead people to get misdiagnosed or not get diagnosed at all?

Eric Garcia 42:05

I think because, again, to your point, where the, the argument or the motivation that a lot of people have toward Autism is and you know, is kind of just steering that energy toward the wrong location. Like you're saying, Let's wipe out let's cure autism. Alright, well, first off, yeah, there are so many people that need help, that you're not going to cure air quotes. Yeah. First, they need services. They need help, if not from my wife, Eric, by the time my kids were three years old, we were getting 20 hours of services in our house, speech therapy, occupational therapy, physical therapy, that made a huge difference. And my wife will say it all the time. If not, for those therapists who did a phenomenal job, coming to our home and working with our children. She says they save their life. Now think about again, and especially after reading this book, I think about the fact that what if my boys did not have those services, and there are so many of them out there boys and girls who don't? And what would that future look like for them? And without people understanding that they may not have been on the severe side of it, but think about someone who has a severe diagnosis of one without getting services?

Unknown Speaker 43:30

Yeah, I mean, if somebody needs more services, or you know, has higher support needs. That's really, if they're not getting those that is real, that's really troubling. So like, I'll give you the perfect example of that. Is that like, for the longest time? oddly enough, it was, you know, for you, you mentioned I'll pass but then like, when my parents, my mom was one who was fighting school system, because the school system was just like, oh, he's fine, you know. And it wasn't until a quarter of my mom and I talked about this, and I write about this in the book. My dad's boss at the time. His wife, I think, worked for we were living in Sacramento, California at the time, worked for the special education department in south of Sacramento County. Had it not been for that specific work, they had dinner at my parents house, you know, they and then they mentioned that immediately after that, like, of course, I got any service I wanted. You know, you know, I think about it shouldn't require Yes, you knowing that especially the special education department. And in whatever school district you are, let's let's take into account you know, so we talk I talk a lot about Ida and this. The federal government is supposed to fund about 60% of, of Special Education Programs for services the residents to go to states, localities You know, are supposed to fund it, the federal government has never spent more than lived up to spent about more than 14%, well, more than 40%. So a lot of pieces as a result, not everybody gets all the services that they need. And I think a lot about parents who have had to do this during COVID, or get to go through an IEP Gen COVID. And then to the point of that, we're not helping the people who need help now. So about 75% of all research spending goes toward looking for the root causes are the best way to treat autistic people are the risk factors, comparatively, only about 6% of all the money that is spent on research to improve services and supports for autistic people, or goes, you know, is spent on that. So that's only 6% of the budget of all the research money in the United States. Our budget spending on research for autism is more than anybody else. So for better for worse for the leaders on it. And well, we do better for every other country. That sets a precedent, and that shows what our priorities are. But thinking if we had, I'm not even saying don't look at the biology, but just like, if we were spending 10% or 20% on services, or lifespan services or lifespan support, imagine what more we could do. Imagine what war whose lives we could improve spent more on those in on researching that we would probably have a better more equitable society. You know, that it's it's, you often have to wonder what if and I think if there's anything that people could take away from this book, I hope you think is imagine what we could do once if we spent time dealing with the, you know, working with the autistic people we have now, I think the most important thing. Yeah,

Eric Garcia 47:03

well, you know, just tracing through. And, and again, just to put a finer point on this. I mean, you mentioned IEP, so for those listening, who may not realize it's an individualized educational program, right? That is taking your child somewhere, they get diagnosed, they do studies. Again, if my wife, we have six children between us and the two youngest, that are the ones who were diagnosed, if my wife wasn't involved in the PTA, and she had made friends and she knew people, if she was a working mother, right, she again, she stayed at home mom, we know that is a very difficult job. But again, if you have a single mother, who works, who does not have the time to be involved with the PTA does not make those connections or doesn't have a tangential connection through work such as your parents, then it is very difficult. Now it's a lot easier, but 10 years ago, so difficult to find out that information and you want to know somebody who would tell you, listen, this is what you have to say, this is where you have to go. And they're going to tell you that they don't have the money because again, I'm just speaking about New York City public schools, they have a certain pool of money. And they only you know, they can only afford so many pairs of so many services. And they'll tell you know, oh, I don't have the funding and meanwhile, but they have to get the funding, because as you said, they have to report it right. But if you don't know all of these rules, you'll think I have no choice. And again, after reading your book, Eric, I work in Manhattan, and I see so many homeless people. And there is no data here. And this is completely anecdotal. And I know that but I see them stemming and I'm thinking to myself, are these homeless individuals? Do they have? Do they have autism? Have they never been diagnosed? Most of them are African American, maybe there were no funds for that? Is this why they're here where they are now because we have a complete lack of understanding for mental health. In this city, we have a lot of money for other things, but apparently mental health issues are really not high on that list. Without services is that where a lot of people end up

Unknown Speaker 49:09

a lot. You know, a lot of people I interviewed for this book have dealt with homelessness, experienced unemployment, or have been, you know, I've had difficult I've lived in poverty. Um, and it's to your point, it's, you know, if you don't get those diagnoses, if you don't get those services, it's nearly impossible. I mean, it's really really difficult to to get through a school system. You know, some people do and God bless them, but like, think about how much easier things would be for them if they if they did if they got the services that they needed. And it's it's something I think about a lot because I know a lot I know a few people who have been homeless for autistic I know people who have experienced poverty or what I've experienced something or other and You have to wonder why was that the case? Because I think the other thing that's important. So you mentioned that is that for a lot of for a long time, and I mentioned this in the book, it was the early studies on autism. The first study on autism, I believe the first which was what had 11 children, none of those children were Anglo Saxon. And two of them were Jewish. In the same respect, all of them their parents were lawyers, or professors, or, you know, kind of a who's who of high society. So for a long time, it was seen as a thing that affected only high society people. Oh, well, guess why? Just who are the people who could afford to go to the best researchers in the country at Johns Hopkins, or wherever you can afford to send their kids away? Yeah, I mean, it's a real question. And I think it's really important to remember that we, we have to think about every autistic person, we have to think about, how do we serve those who don't have any opportunities? And how do we serve those who do have opportunities? Because the thing that I keep on saying is because I think a lot of people, they'll look at my story, or they'll look at my writing. And they'll say, Oh, look at how amazing he is, how much work he did. And, you know, I've done some things that I'm proud of, don't get me wrong, I wrote a whole book. But there are a lot more remarkable autistic people I know that I've met who haven't had the same opportunities. And they're, they don't, they're at a lower, you know, what we would consider a lower station in life. And you have to wonder, Well, why did why was that the case? How come that was the case? Why didn't they get the same stuff? I did? And the answer was, a lot of times the resources weren't there. You know?

Eric Garcia 51:49

What you mentioned in the book, the pivot organization, yeah. What is that? And what do they do?

Unknown Speaker 51:57

Yes. So Pluto was founded by a guy by the name of john bar ball, who is the second openly autistic person ever to work in presidential administration, he worked in the Obama administration. And he works in the Bay Area, working to help consulting with companies to help them not just employ autistic people, but also be more adaptable, and be more accepting of the ones they already have. So he's really good with that. There's also a ton of great organizations, neuro diversity pathways is also really good. And then there, there are tons of other employers that are also worried that also have programs to hire autistic people. So it's growing, and hopefully it grows into more different types of industries.

Eric Garcia 52:43

What do you want readers to take away from your book the most?

Unknown Speaker 52:49

Well, they want to take away the most is recognize that. So it depends on who the reader is. If you're autistic, I want you to read this book and say that you are not a failed version of normal, that you are fine, just as you are, yes, you may have difficulties and challenges just like any other person, and you might have comorbid health conditions that you be autistic is not a problem. And that we should work to make your life easier and better, just like we do every other disabled person, whether you're deaf, or you're blind, or whatever. And second, what you know, I would want them to say is that your voices, your voices valuable in your voice to support however you speak, whether it's through communication, device, sign language, whatever, or with your voice with your mouth. What I would say to what I want non autistic people to say is I want them to hear that their autistic loved ones have important things to say you should listen to them at any decision regarding their lives, that you should work to make sure that they instead of focusing on curing them focus on how do we make sure that they have a good and happy life. And what does that look like because it's going to look different for every other artistic, you know, what makes me happy on any given day is to go to work, come home, you know, bigger grilled cheese sandwich and watch Netflix. No. But that is going to make it all the weekends you don't get together with my friends watch college basketball. But what makes but if you're if your autistic loved one, if that makes them happiest to play with their toys or to you know, go for a walk or things like that. And be able to live in their community or live in a live with their family, or to work in a job that pays them above the minimum wage and allows them to have a job that isn't exploitive, or if they can't work to live in a community that makes sure that they don't go into poverty then that's Do the thing, but always make sure that you know that this is what they want and that their needs. A lot of parents mean Well, I say 90% of parents meet Well, I go as far as to say 95. But a lot of parents think that if that what I want, should also is what the kid wants. Yeah, but my loved one wants or the person who's in charge of what you're not annoys, but they also don't even take the time to think or ask what is it that they want? So I think it's important to say that in every decision, just figure out what what it is that they want? And how do you work to make that happen?

Eric Garcia 55:42

I'll say to my friend, Anthony, because I know quite a few autistic people. And I'll say it's like a flashlight. Except instead of a wide beam, it's a very narrow beam. Right. And when they focus on something, for the most part, it's a level of attention that most of us will never achieve salsa, you know, listen, for some of them. This is just their thing. You know, they you find that thing that they like, and you try to focus it on that or in a way in which their mind wraps around something, and just get out of the way. Yeah. But yeah. So, you know, after reading the book, just my perspective, as far as I knew, that I didn't know nearly enough about autism. Now, I know that I know, even less. So. I have a lot of work to do. But I think the main thing is that you've laid this foundation of the fact that there is a large misunderstanding about the the whole entire spectrum of autism, and how autistic people feel which again, I never thought of. So that's, I have to give you a big thank you for that. But before I let you go, I always like to ask authors. So before we wrap this up, just to talk about regards to your a bit. Did you ever envision yourself as an author? Was that something that when you were growing up you thought you were going to do?

Unknown Speaker 57:15

No, I didn't. I didn't know the first thing about writing a book. I didn't know. I didn't short stories when I was younger, but I never, you know, I never thought the idea of reading nonfiction I just see. It just didn't seem like something that was partly wasn't seen as possible. It just, it just was it just wasn't something that I thought that I thought about. But I mean, you know, it was a warning. And it was a lot of hard work. But But no, I didn't really think about it. And it still is kind of weird that like, Oh, yeah, I read a book, you know,

Unknown Speaker 57:48

like, people say to me, oh, you're an expert on this thing. And I'm like, Oh, yeah, I kind of wrote a book on.

Eric Garcia 57:57

If you could interview anyone from history, living and dead, who would it be? And why?

Unknown Speaker 58:02

Oh, um, I have to go with Frederick Douglass. Okay. Um, just because I like to quote him in the book, but like, I kind of want to know what it was like to be on the run. When you were, you know, when he when he ran away from slavery to get before abolitionists bought his freedom. I kind of want to know what it was like to be a very, very public figure and know that you could have a freedom taken away from you at any moment. But then also, I want to know why after about working to abolish slavery, while he was still advocate for the rights of women and the rights of Chinese Americans and immigrants, and what what made him see and universalize these things so So, so, property him the other person, and this is really, really corny, but But both of my grandfather's bought them died before I was born. And I just kind of want to know, you know, I that's, you know, my grandma, both of my grandmother's grandmother's before they passed away. I'm grateful for that. I'm forever grateful for that. And I learned so much about who I am. And it explains so much, but I kind of want to know what what how they how they saw things. You know, so So yeah, I think I want to, I think I'd want to interview

Eric Garcia 59:27

so where can people find out more about you and your work? Social media website,

Unknown Speaker 59:35

so you can follow me at Eric M. Garcia on Twitter and usually on Twitter. I am a senior political correspondent for the independence so you can read my work there. I have a book coming out you know, W been stressing called, we're not broken, changed the autism conversation. You can get it wherever you want. Wherever you buy books, you can preorder it now on Amazon at bound wherever you'd like to buy your books. And you can usually I usually read my dm. So if you DM me on Twitter, usually I'll respond. So

Eric Garcia 1:00:07

well, we have been speaking with Eric Garcia about his book where not broken changing the autism conversation. Eric, I can't thank you enough for writing in the book. I think this is a really good starting point for anyone who wants to have a better understanding of autism because you really do break it down for us. You also, you make it personal because obviously you share with us your experiences, what you've gone through, and you make it very relatable.

Unknown Speaker 1:00:34

Thank you very much. I really appreciate that. You're great, Greg. I wish you all the best. Thanks.

Matt Crawford 1:00:44

I hope you enjoyed this episode of The Curious man's podcast. If you'd like to find out more about the show, please visit us at the curious Men's website.com or you can tweet us at TC MPC tweets. Give us a follow. Leave your comments or questions there and I will get back to you. Thank you so much for listening, sharing. And thank you for your curiosity. As they say a question not asked is a question not answered.

Transcribed by https://otter.ai