Latest / The Remedy Revolution Podcast / Autism Speaks...Forbid Her from Speaking about THIS with Katie Wright

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Autism Speaks...Forbid Her from Speaking about THIS with Katie Wright · The Remedy Revolution Podcast

• 0:14
  SPEAKER_01: Hello everyone and welcome to the Ready Revolution podcast.
• 0:17
  SPEAKER_01: My name is Erin, and today's guest is somebody who I've known about for a very, very long time.
• 0:22
  SPEAKER_01: She has quite the interesting story, so I'm happy to bring her on to tell it herself.
• 0:28
  SPEAKER_01: Please welcome to the show, Katie Wright.
• 0:30
  SPEAKER_02: Well, thank you.
• 0:31
  SPEAKER_02: I'm very happy to be here.
• 0:32
  SPEAKER_02: Thank you, Erin.
• 0:34
  SPEAKER_01: So, Katie, tell us a little bit about this whole story because I know, you know, I had been involved with an organization called Autism One for a long time.
• 0:44
  SPEAKER_01: Um, you had been involved with an organization called Autism Speaks.
• 0:48
  SPEAKER_01: And there was a bit of uh carfuffle, shall we call it?
• 0:54
  SPEAKER_01: Um in the autism world.
• 0:56
  SPEAKER_01: So I uh I would love to hear you tell us that story from your perspective.
• 1:01
  SPEAKER_02: Yes.
• 1:02
  SPEAKER_02: Um you know, it's just uh it was my son was developing really typically.
• 1:08
  SPEAKER_02: He was very physically active, uh appropriate.
• 1:12
  SPEAKER_02: He had maybe over a hundred words, a little bit over 18 months, pointing, everything was normal.
• 1:19
  SPEAKER_02: And for so long, I had to drag around um a cassette to like play this at Dr.
• 1:25
  SPEAKER_02: Wood believed me.
• 1:26
  SPEAKER_02: And then he got the DTAP Hib Heb Prevenar, and he had had bad reactions before, like hours of screaming, but nothing.
• 1:36
  SPEAKER_02: This was the one, and screaming, like unbelievable screaming, and it went on for 10 hours and super high, 103-degree fever.
• 1:47
  SPEAKER_02: That went on almost all night.
• 1:49
  SPEAKER_02: And um, after that, it was a pretty steep spiral downward where he he lost all his words, never really spoke again, and then stopped pointing, um, was unable to remember how to go upstairs.
• 2:05
  SPEAKER_02: So he lost all his gross motor abilities, and he couldn't recognize anybody anymore except his father and I.
• 2:13
  SPEAKER_02: So it was very dramatic for me.
• 2:15
  SPEAKER_02: And at first I didn't realize that that's not the same with everybody.
• 2:19
  SPEAKER_02: Some kids um are like that at the beginning or autistic, and then anyway, so mine was very dramatic.
• 2:25
  SPEAKER_02: So the irony is my parents only founded autism speaks because of what happened.
• 2:30
  SPEAKER_02: I mean, so dramatic, and they were horrified that like no doctors could explain it, and that's why they found that autism speaks, but then they kind of got co-opted by um very conservative researchers and a very genes-based agenda.
• 2:47
  SPEAKER_02: And um, at the time I was doing a lot of interviews and a lot of press and media and for them, and I was happy to do it, but then it just got to a point where I felt like none of this is achieving anything.
• 2:59
  SPEAKER_02: There's no good research coming out of this.
• 3:02
  SPEAKER_02: Um and the last thing was um there was this supposed to be this autism treatment network, which I thought, great, I can really contribute, I can be part of this with the parents because mentors really helped me.
• 3:15
  SPEAKER_02: And when they fired me from that, I was just then there's no point.
• 3:19
  SPEAKER_02: Um, and I never tell anyone what to do.
• 3:22
  SPEAKER_02: Um, I just say I did this, and maybe it'll help, maybe it won't.
• 3:26
  SPEAKER_02: But um it was the research.
• 3:28
  SPEAKER_02: Um, they spent almost 50 million dollars on research.
• 3:34
  SPEAKER_02: Pretty much 95% of it is terrible.
• 3:38
  SPEAKER_02: So I just had a oh, and also they wanted me never to talk about vaccines, you know.
• 3:46
  SPEAKER_02: Sorry.
• 3:47
  SPEAKER_02: Yes, I used to work with gay men in the early 90s and pre-counseling and my internship.
• 3:54
  SPEAKER_02: It's like would say to me then don't talk about HIV.
• 3:56
  SPEAKER_02: Like, you know, of course you have to talk about vaccines if you're talking about autism.
• 4:02
  SPEAKER_02: So it just then I just realized that my parents really um just they really believe the ultra-conservative researchers, and very sad, they've achieved nothing.
• 4:16
  SPEAKER_02: So yeah.
• 4:18
  SPEAKER_01: Yeah, so it can be really difficult to navigate, you know, as a parent with a new diagnosis, you come in and you're concerned, obviously, about your child, and you want to do anything and everything to help them.
• 4:33
  SPEAKER_01: And so, you know, for some parents, they are um navigating down a biomedical route.
• 4:42
  SPEAKER_01: Other parents go into a doctor's office who might give them the diagnosis and a swift kick in the rear end and say, you know, go to ABA or you know, there's other services for you, right, but not offer any kind of assistance for the real symptoms that these kids are suffering from rarely, yes, very rarely.
• 5:04
  SPEAKER_01: So um, so ultimately, um how did you navigate some of that when you were dealing with you know parents who were, I I presume, very well-meaning, um but unfortunately misguided.
• 5:20
  SPEAKER_02: Yes.
• 5:21
  SPEAKER_02: Well, um, so we were really um by the book, we wanted to do exactly what uh at the time it was Dr.
• 5:30
  SPEAKER_02: Agnes Whitaker, who was a psychiatrist at Columbia Presbyterian.
• 5:33
  SPEAKER_02: And since I've discovered that there's just way too many psychologists and psychologists in the field because they see it almost entirely as behavioral.
• 5:41
  SPEAKER_02: So she recommended to us like intense ABA speech OT.
• 5:46
  SPEAKER_02: And they basically promised like within six months, you're gonna see a big difference.
• 5:51
  SPEAKER_02: Okay, he's worse, he's steadily worse, and he's sick all the time.
• 5:58
  SPEAKER_02: And they had no answers and just nothing, and it's like malpractice to be almost willfully ignorant about he clearly had pandas looking back, uh, to be so willfully ignorant and just basically say, Well, that's the way it is, um, and be unwilling to have the conversation about vaccines.
• 6:19
  SPEAKER_02: It's just, I feel like uh if if you're not one of the very lucky, and I think maybe 10% are who get AB and speech and OT, and everything gets better.
• 6:27
  SPEAKER_02: If that's not you, you know, you're on your own.
• 6:32
  SPEAKER_01: Yeah, so so tell us a little bit about some of the research that Autism Speaks was looking into, because from my understanding, this was primarily looking at genetics.
• 6:44
  SPEAKER_01: Is that yeah?
• 6:46
  SPEAKER_02: Um, they convinced my dad, uh, the Steve Shear from Sick Kids Hospital Toronto is a big genomist, and he convinced my dad that they can subtype autism genetically and then quote unquote plug in the drug.
• 7:03
  SPEAKER_02: I said to my dad, you can't subtype autism uh genetically, because yes, there are these odd variants, but they're also in the general population of people who don't have autism.
• 7:15
  SPEAKER_02: And he was adamant that this would work.
• 7:18
  SPEAKER_02: And I mean, I think autism is like alcoholism.
• 7:22
  SPEAKER_02: There's so many different factors.
• 7:25
  SPEAKER_02: Um, you're not gonna find a genetic gene.
• 7:27
  SPEAKER_02: I mean, like for example, uh I think about um the comedian Kathy Griffin.
• 7:32
  SPEAKER_02: She was terrified because everybody, literally everyone's an alcoholic, and the decision she made is I'm never gonna drink.
• 7:38
  SPEAKER_02: And she's not so it wasn't inevitable if she never has alcohol.
• 7:42
  SPEAKER_02: So um I think a lot of our kids like that.
• 7:44
  SPEAKER_02: They have a predisposition, but it takes something to manifest it.
• 7:49
  SPEAKER_02: So um yeah, so that so Steve Shearer said he could um do you know, and anyways, it was ridiculous.
• 7:56
  SPEAKER_02: And they they spent a fortune, hundreds of millions of dollars labeled, not hundreds, I'm sorry, like 10 million, 20 million, maybe double that.
• 8:04
  SPEAKER_02: And of course, they didn't find any way to phenotype genetically.
• 8:09
  SPEAKER_02: They would say it was a huge scientific win because they found all these rare variants, and we just need to do more research.
• 8:18
  SPEAKER_02: But oh, and then they say we found a lot of kids with like genetic disorders.
• 8:24
  SPEAKER_02: Okay, you know, like I think there's a test for fragile X right now, and it's like available to anybody, and the diseases that they were studying really are URES isn't autism, tuberos tuberosclerosis isn't autism.
• 8:40
  SPEAKER_02: So I think it's a big red herring.
• 8:42
  SPEAKER_02: Yeah.
• 8:42
  SPEAKER_02: So that's really where all of it, and then Sherry Dawson at the time, um, she's a psychologist at UNC, and she was really into early intervention, and she put a ton of money in that.
• 8:54
  SPEAKER_02: But then she would say to me, Um, I never saw kids like Christian.
• 8:58
  SPEAKER_02: And I think she mistook that for they don't exist, because I said, Well, I would never would be in one of your studies because he was so he's so much more, he can't speak and he has GI problems.
• 9:09
  SPEAKER_02: And what I find is most of those early intervention studies are done with healthy, high-functioning kids, and then they generalize it to everybody.
• 9:17
  SPEAKER_02: So those were the two areas, and I felt that was leaving like 80% of people behind.
• 9:23
  SPEAKER_01: Yeah, I mean, so much of the research really hones in on a specific population or um looks at um specific treatments, but but maybe the kids that are being funneled into that treatment are um, you know, they're not receiving other biomedical treatments or you know, whatever the case may be.
• 9:45
  SPEAKER_01: I feel like the data is kind of flawed from the get-go because so much of these conversations are um they don't take a more broad perspective, like you said.
• 9:58
  SPEAKER_01: Like some people, the general population has all um a lot of these genetic SNPs, but you know, um, but we're not looking for those SNPs in the general population.
• 10:10
  SPEAKER_01: We're only looking for them in kids with autism.
• 10:12
  SPEAKER_02: Yes.
• 10:13
  SPEAKER_02: And that's, you know, they're thinking of it like Huntington's disease.
• 10:17
  SPEAKER_02: Like they will find, okay, there's the gene, this is why this happened.
• 10:20
  SPEAKER_02: It's not like that.
• 10:21
  SPEAKER_02: That's I think even 20 years ago, that was a willfully naive um characterization of autism.
• 10:30
  SPEAKER_02: It's just absurd that they even thought that at all, but they did.
• 10:34
  SPEAKER_02: So what was the other thing they wasted money on?
• 10:36
  SPEAKER_02: Oh my god.
• 10:37
  SPEAKER_02: Um yeah, it was early intervention, genetics, genomics.
• 10:43
  SPEAKER_02: Oh, and they would Ibis, they gave money to Ibis, which was Jeremy Piven at North Carolina.
• 10:49
  SPEAKER_02: This was this, I think it was like all in all$75 million project to do brain imaging of siblings of kids with autism, like every other month or something, hugely expensive.
• 11:00
  SPEAKER_02: And they found like, yes, after whatever two years, there was a difference in the brain, but they refused because it was confusing, they refused to collect medical records, vaccine records.
• 11:13
  SPEAKER_02: So they're taking a picture of the brain before autism and then after.
• 11:18
  SPEAKER_02: So uh really sad because to do a better study wouldn't have cost that much more at all.
• 11:24
  SPEAKER_02: But you know, obviously, I think they're afraid of what they find.
• 11:28
  SPEAKER_02: So they keep these studies very narrow.
• 11:30
  SPEAKER_01: Yeah, and so as a parent, um, walk me through what it was like for you knowing that your son had regressed post-vaccination, and then not being able to tell other parents about that.
• 11:46
  SPEAKER_02: Right.
• 11:46
  SPEAKER_02: Like the first thing you get is a lot of shut-ups, don't talk about this.
• 11:51
  SPEAKER_02: Like a pediatrician said to me, don't talk about this.
• 11:55
  SPEAKER_02: This is um going to scare other parents.
• 11:58
  SPEAKER_02: And I don't want to do that, uh, obviously.
• 12:01
  SPEAKER_02: Um, but the overall attitude was like, this will go away if we don't talk about it.
• 12:07
  SPEAKER_02: And it's it's such, you know, like when your kids like, you can't see me.
• 12:11
  SPEAKER_02: It's like that.
• 12:13
  SPEAKER_02: And I remember telling my dad, I was talking to people at the CDC, I said, Dad, these people aren't, they're not smart.
• 12:19
  SPEAKER_02: They just they can't even answer basic questions.
• 12:22
  SPEAKER_02: And he's like, You're wrong, and I'm gonna go down there and I'm gonna talk to them.
• 12:26
  SPEAKER_02: And then he comes back, and I think it was the first time in his life he's like, You were right.
• 12:30
  SPEAKER_02: This is the way they were right.
• 12:33
  SPEAKER_02: And he wanted to talk to them about what they were doing for autism.
• 12:36
  SPEAKER_02: And the guy who was running it uh said, Oh, we don't, this is 2004.
• 12:42
  SPEAKER_02: We don't want to talk about that because it'll just scare people.
• 12:45
  SPEAKER_02: And he's like, Well, shouldn't you be doing like a what are the signs are and kind of educating people?
• 12:50
  SPEAKER_02: He's like, to educate them is to make trouble.
• 12:53
  SPEAKER_02: So that's what my mother did really well.
• 12:58
  SPEAKER_02: She created more awareness, like this is what this is, and it's not just in the book that you're born this way, it can be different ways.
• 13:06
  SPEAKER_02: And when they started doing that, um the CDC was kind of shamed into addressing autism, but they really um just were I just didn't watch the idea that you don't speak about it, it's not happening.
• 14:39
  SPEAKER_01: Yeah, and I I think um additionally, there was kind of this real push towards um the acceptance of neurodiversity.
• 14:50
  SPEAKER_02: Yeah, yeah.
• 14:52
  SPEAKER_01: And I think ultimately that you know is still at play now.
• 14:57
  SPEAKER_01: Um so tell me your thoughts on some of that and um why you think these conversations often get shifted towards that more narrow mindset, I guess.
• 15:12
  SPEAKER_02: I think they autism speaks and I act that just totally derailed the all the research and the agenda and made it about very, very high-functioning people who were verbal.
• 15:25
  SPEAKER_02: And I think a lot of these high-functioning people are not happy, they're lonely, they feel misunderstood.
• 15:32
  SPEAKER_02: Um, and then also for some people who probably aren't even autistic but are lonely and quirky, they want to belong.
• 15:37
  SPEAKER_02: And they think, oh, this is cool.
• 15:39
  SPEAKER_02: It's a disability, we're all together, and I can, it's not me.
• 15:43
  SPEAKER_02: I can demand that you accommodate me.
• 15:45
  SPEAKER_02: You fix this for me.
• 15:47
  SPEAKER_02: Um and I think the research community liked that because that's very safe research.
• 15:54
  SPEAKER_02: And they took the agenda from it being, and there would be no autism speaks if Krishna was high functioning, or be if they wouldn't have done it.
• 16:02
  SPEAKER_02: Uh, they took the agenda from fixing and helping kids to accept it as it is, and it's your problem.
• 16:10
  SPEAKER_02: And it was so funny at the time, people would like text me awful things and like you're controlling your son, and and A S A N, you know, the associated association of self-advocacy.
• 16:21
  SPEAKER_02: And I invited a whole bunch of them over, and I said, come over, and then you can tell me if you think I'm controlling him and telling him what to do.
• 16:31
  SPEAKER_02: And so they came over, they couldn't leave fast enough there so hard.
• 16:38
  SPEAKER_02: They saw him him have a meltdown because he was having GI pain, and they saw that he could not, um, he just felt awful.
• 16:47
  SPEAKER_02: And then it wasn't he didn't the his problem wasn't me speaking for him, put it that way.
• 16:52
  SPEAKER_02: They understood that wasn't the problem.
• 16:55
  SPEAKER_02: Um, but these people got it to be very powerful, and then before we know it, Catherine Lord, who's a very famous and incompetent researcher, was the one who collapsed autism and Asperger's together.
• 17:08
  SPEAKER_02: And as a result of that, 60% of all autism research is done on the highest, healthiest functioning people.
• 17:16
  SPEAKER_02: And it's atrocious, it's absolutely atrocious.
• 17:19
  SPEAKER_02: And to this day, I don't know why she didn't lose her license and why she's still working in that capacity.
• 17:24
  SPEAKER_02: Um, so that really kind of ruined research for kids like mine or kids who like yours who have pants.
• 17:31
  SPEAKER_02: Um, it completely all these they filled IAC with all these self-advocates, like dozen of them.
• 17:37
  SPEAKER_02: And there was nobody who was a parent of a child like me.
• 17:41
  SPEAKER_02: And they became in a weird way reverse politically correct, saying, like, people have to the would they have to speak for our community.
• 17:48
  SPEAKER_02: I'm like, well, he's not speaking for me.
• 17:50
  SPEAKER_02: RA Neaman isn't speaking for Christian.
• 17:53
  SPEAKER_02: Um, so that was in and that I think there's a great way to address that.
• 17:58
  SPEAKER_02: I think it's easy to address that, like have them meet our kids and and speak to them about the real problems we have.
• 18:05
  SPEAKER_02: And that they were afraid to do that.
• 18:08
  SPEAKER_02: Um, and the media loved this, the high-functioning people.
• 18:13
  SPEAKER_02: So it really got derailed, and there was no good leadership to keep it on track.
• 18:18
  SPEAKER_02: It was very sad.
• 18:19
  SPEAKER_02: Yeah.
• 18:20
  SPEAKER_02: So autism speaks became all about acceptance.
• 18:23
  SPEAKER_01: Yeah, and I you know, I think so much of that narrative really remains and it has branched out into these other communities, unfortunately.
• 18:32
  SPEAKER_01: And and just uh it it causes unnecessary suffering in my mind because we are um negating the experience of so many other people who don't fit into that narrow uh label, right?
• 18:49
  SPEAKER_01: So um yes, I agree.
• 18:52
  SPEAKER_01: So at this point, um I know you know you've been involved with the IACC.
• 18:59
  SPEAKER_01: Yeah.
• 18:59
  SPEAKER_01: Um, so tell us a little bit about that.
• 19:02
  SPEAKER_01: I did sit in on a few of the meetings and uh you know, recently or before, recently, yeah.
• 19:14
  SPEAKER_01: Yes.
• 19:15
  SPEAKER_01: Yeah, and well, one thing that really struck me is uh which is kind of similar in line with with what we're talking about, is that this whole idea of um diagnostic overshadowing.
• 19:28
  SPEAKER_01: So when we have this umbrella of autism, when we negate even the idea of a potential pans pandas um comorbidity, um then we uh we stop looking.
• 19:43
  SPEAKER_01: We're not curious anymore.
• 19:45
  SPEAKER_03: Right, right.
• 19:45
  SPEAKER_01: And so um tell me a little bit about what uh everything that's been going on at the IACC is doing to address that.
• 19:56
  SPEAKER_02: Um 25 years ago, my mom and I met with Frances Collins, who's the then president of NIH.
• 20:04
  SPEAKER_02: And at the time, I believe they were only spending$60 million a year on autism.
• 20:08
  SPEAKER_02: And my mom's like, what do I have to do for you to see progress?
• 20:12
  SPEAKER_02: And he said, double our budget.
• 20:15
  SPEAKER_02: And quote unquote, you will see the lights on the board.
• 20:18
  SPEAKER_02: I okay, so my mom, she was relentless.
• 20:20
  SPEAKER_02: I think she quadrupled the budget and uh five, ten, zero progress.
• 20:25
  SPEAKER_02: So it's not about the money.
• 20:27
  SPEAKER_02: And then I realized, okay, it's not because in the beginning I thought they just don't have the money.
• 20:30
  SPEAKER_02: Um, then I was looking at the research and it was horrible.
• 20:34
  SPEAKER_02: So then I got interested in how do they make these decisions?
• 20:37
  SPEAKER_02: So I started watching IAC to learn like these are the people at the NIH who are choosing the research, the the um institutional members, and I was horrified.
• 20:47
  SPEAKER_02: Their understanding of autism is so minimal, um, and they're almost all geneticists or psychologists, and they they are very interested in their niche, and they don't really want to hear from parents like me.
• 21:01
  SPEAKER_02: Um they don't even want to hear about regression.
• 21:05
  SPEAKER_02: So then I realized the reason we're not making any progress is because the people who are choosing the grants are totally unqualified and have an agenda.
• 21:16
  SPEAKER_02: And so then I started watching it regularly.
• 21:18
  SPEAKER_02: And there in the beginning there was um Lynn Redfield, who was um Redwood, I'm sorry, who was a wonderful public advocate, but she was probably the only parent, the only person in a room of like 25 people who knew anything about kids like mine.
• 21:34
  SPEAKER_02: So I watched how the research agenda just became so narrow.
• 21:40
  SPEAKER_02: And these people, the NIH people were so willfully walled off.
• 21:46
  SPEAKER_02: I remember when I was at SafeMinds, the Safe Minds president said, you know, I represent represent, you know, 5,000 people who have severe autism families.
• 21:54
  SPEAKER_02: And I'd really like to meet with the the NIH person who's kind of in charge of the strategic plan.
• 22:00
  SPEAKER_02: And they said, We're busy.
• 22:02
  SPEAKER_02: And we went, you know, what I'm in New York and Chuck Schumer has what, like 18 million constituents, and I'll call his office and say, I want to speak about this bill that give you three weeks from Wednesday, you know.
• 22:13
  SPEAKER_02: I so to me, there was such an absence of accountability, leadership, and honestly, common human dignity decency just to do your job, which is also interacting with the public.
• 22:26
  SPEAKER_02: So at that point I realized that there's no there's no progress because they invest in the worst research.
• 22:35
  SPEAKER_02: Um and the people, it's the same people over and over again who are choosing the grants, and it's their friends who are getting it's the same, it's Emery, it's Vanderbilt, it's Yale, um, UCLA.
• 22:51
  SPEAKER_02: It's like the same group over and over again.
• 22:54
  SPEAKER_02: Yeah.
• 22:55
  SPEAKER_02: So that's so that's I realize through IAC why we're not making progress.
• 22:58
  SPEAKER_02: So don't let them tell you it's money.
• 23:00
  SPEAKER_02: It's really not.
• 23:02
  SPEAKER_02: Um and you know, we just have my big bagaboo.
• 23:07
  SPEAKER_02: So Kennedy did a great job uh reforming the public membership, and now the public membership finally reflects our community.
• 23:17
  SPEAKER_02: And there's a lot of parents who have kids who are severely affected, moderately affected, and just medically affected.
• 23:25
  SPEAKER_02: So that's great.
• 23:27
  SPEAKER_02: So there was an urgency I never saw before at IAC for like right away.
• 23:32
  SPEAKER_02: They wanted to vote on sending a recommendation to Secretary Kennedy about declaring wandering an urgent issue because it's killing like 25 minimum kids a year.
• 23:45
  SPEAKER_02: And the pushback from the NIH people was shocking, shocking.
• 23:51
  SPEAKER_02: They were all worried about um, this is not how we do things, we can't decide on doing things on the spot.
• 23:59
  SPEAKER_02: And if there was a motto for them in autism in the NIH, it would be like, we can't do it because and as we're we have like we are stuck with people who are in positions of power who are truly terrible at their job.
• 24:18
  SPEAKER_02: So that's what it's come down to, very sadly.
• 24:21
  SPEAKER_02: But Sylvia Fogle is the new IF coordinator, and she's terrific.
• 24:26
  SPEAKER_02: She is absolutely terrific.
• 24:28
  SPEAKER_02: So I was very happy with her strategic plan.
• 24:31
  SPEAKER_02: For 25 years, they they put out this strategic plan about how they think the money should be invested.
• 24:36
  SPEAKER_02: And pretty much every year it's the same.
• 24:37
  SPEAKER_02: It's like early intervention.
• 24:39
  SPEAKER_02: And I think two years ago, I it got to the point I looked, and there's like 10,000 signs of autism research published.
• 24:47
  SPEAKER_02: 10,000.
• 24:48
  SPEAKER_02: They're all good.
• 24:49
  SPEAKER_02: So I was like, you know what?
• 24:50
  SPEAKER_02: If a doctor doesn't know the signs of autism, it's because he or she doesn't want to know.
• 24:55
  SPEAKER_02: So it's like smoking.
• 24:56
  SPEAKER_02: All the research has been done.
• 24:58
  SPEAKER_02: So that was the only time I think they were forced to listen to me because they said it's you keep investing in a solved problem.
• 25:06
  SPEAKER_02: Um so Sylvia addressed that the redundancy in research, which is great, and the need to do research on regression.
• 25:13
  SPEAKER_02: So that's been great.
• 25:16
  SPEAKER_01: Yeah, and in I think, you know, um I've submitted comments to AyAC um primarily about um the idea of pans pandas having some kind of presence under that umbrella because you know, we recognize it uh kind of as like like redheaded stepchild, if you will.
• 25:39
  SPEAKER_01: And so many kids with autism also display symptoms of pans pandas at one time or another.
• 25:47
  SPEAKER_01: And so uh yeah, so uh, you know, and I I hear that, you know, from pretty much every single parent.
• 25:56
  SPEAKER_01: Um you know, that yeah, well, then they got pants and you know, this happened and that happened.
• 26:01
  SPEAKER_01: Well, so if we're not talking about, you know, the real need, particularly when it comes to uh mental health diagnostics, um, you know, addressing does the kid have infections, you know, do they have brain inflammation?
• 26:19
  SPEAKER_01: All of these things might be um, you know, a good thing to take a look.
• 26:26
  SPEAKER_02: I said the autism speaks.
• 26:28
  SPEAKER_02: I said, if you're going to give uh money a grant, you should require that they all take like a CEU, like a three-hour CEU in GI issues or something.
• 26:40
  SPEAKER_02: And it's they were like, oh my god, like you're asking so much.
• 26:43
  SPEAKER_02: And I said, I really don't think so, because I think the problem is doctors.
• 26:46
  SPEAKER_02: Like I would take my son who was normal, and then all of a sudden he's closing the door or flushing the toilet a hundred times a day.
• 26:54
  SPEAKER_02: And I'd be like, What's going on?
• 26:57
  SPEAKER_02: Um and they just said it's just part of the autism.
• 27:00
  SPEAKER_02: And then later, when I figured out from another parent who were so helpful to me, this was pandas, and I I went in to the doctor again, I had brought like sheets of paper.
• 27:09
  SPEAKER_02: I said, This is what it is.
• 27:10
  SPEAKER_02: And he's and he was like, Well, that's a very um controversial diagnosis.
• 27:16
  SPEAKER_02: I said, What's good?
• 27:18
  SPEAKER_02: Is diabetes controversial?
• 27:20
  SPEAKER_02: Is it it isn't a good or bad, it just exists, but clearly the AAP does not want to learn about this or hear about it.
• 27:29
  SPEAKER_02: So it's so much um institutional deliberate neglect.
• 27:35
  SPEAKER_02: Um you know, they'll talk to you, tell you're blue in the face about the mumps, um, that they don't know anything about pandas.
• 27:43
  SPEAKER_02: I mean, like we saw this growing up.
• 27:45
  SPEAKER_02: I grew up in Connecticut, and people who got Lyme disease were told to see a psychiatrist.
• 27:50
  SPEAKER_02: So I looking back, I have so much more empathy for them because nobody seemed to be interested in Lyme, which was weird, and would there was no protocol.
• 28:00
  SPEAKER_02: Um, so it reminded me of that.
• 28:04
  SPEAKER_02: Poor Lyme people.
• 28:05
  SPEAKER_02: Oh my god.
• 28:06
  SPEAKER_01: Yeah, my son and I also have Lyme.
• 28:09
  SPEAKER_02: So it's terrible disorder.
• 28:12
  SPEAKER_01: Yeah.
• 28:12
  SPEAKER_01: Yeah.
• 28:13
  SPEAKER_01: Yeah.
• 28:14
  SPEAKER_02: Did you get any good help from a doctor in the beginning?
• 28:16
  SPEAKER_01: Not initially.
• 28:18
  SPEAKER_01: You know, um, he was born in 2007, onset was around age four.
• 28:23
  SPEAKER_01: So, but we didn't really get any kind of diagno diagnostic clue until he was about seven.
• 28:30
  SPEAKER_01: Um and even then it was at the urgency of another parent.
• 28:38
  SPEAKER_02: Yes, yes, that's what it takes because uh the AAP is just such a sad organization.
• 28:45
  SPEAKER_02: It just seems so bought and paid for.
• 28:47
  SPEAKER_02: Like if you go to the website or their ex account, it's all about um vaccines and communicable diseases.
• 28:54
  SPEAKER_02: And in 2026, communicable diseases are not, this isn't 1904, where they didn't know what causes, you know, measles or whatever.
• 29:03
  SPEAKER_02: Um chronic disease, as Kennedy said, uh, is the real issue.
• 29:09
  SPEAKER_02: And I don't know, I think that I think that they're just part of Pfizer at this point, or an arm of pharma.
• 29:16
  SPEAKER_02: So yeah, it's it's just was crazy to me how hard it was to get help with pandas.
• 29:21
  SPEAKER_01: Well, and I and I think, you know, I I feel as though pandas is like what autism was maybe like 25 years ago.
• 29:32
  SPEAKER_01: It's a good analogy, yeah.
• 29:34
  SPEAKER_01: Because, you know, we do have um there are more um physicians that are looking into it.
• 29:41
  SPEAKER_01: I'm involved with maps, for example.
• 29:44
  SPEAKER_01: Yeah, there's you know, a large uh group of us, but the need is dire.
• 29:51
  SPEAKER_01: You know, there's so many kids that are struggling.
• 29:55
  SPEAKER_01: And, you know, in my opinion, pans panda is is far more often misdiagnosed than autism.
• 30:02
  SPEAKER_01: And so that's where the urgency for me comes in.
• 30:06
  SPEAKER_02: I mean, they should be having the NIH should be having all these RFAs on pandas.
• 30:11
  SPEAKER_02: And I know, and every year I go through their NIH reporter, which is a list of every single thing.
• 30:17
  SPEAKER_02: I mean, they found nothing about pandas.
• 30:19
  SPEAKER_02: It's willful almost.
• 30:21
  SPEAKER_02: Um, and like you said, it's just too difficult to get help.
• 30:26
  SPEAKER_02: It's it shouldn't be this difficult.
• 30:28
  SPEAKER_02: Um, and there's just too few places, like they fund these special things called Autism Center for Excellence, and I you know, use quotation marks there, um, which which spend, oh my God, like hundreds of millions a year.
• 30:42
  SPEAKER_02: And they're hospitals that are supposed to be about medically treating people with autism.
• 30:46
  SPEAKER_02: They provide no medical treatment, it's all about just diagnosis.
• 30:49
  SPEAKER_02: And that would be a great place.
• 30:50
  SPEAKER_02: I remember I said to someone at the NAH to set up pan clinics so you could educate people, too controversial, really.
• 31:01
  SPEAKER_01: Well, and I mean, it's just it so often the the diagnosis becomes a mental health diagnosis.
• 31:08
  SPEAKER_01: So it's it's the anxiety, depression, and these kids just get on this, you know, pharmaceutical roller coaster and they don't improve because nobody's looking at their physiology.
• 31:21
  SPEAKER_02: No, nobody's connecting all the staph infections or strep.
• 31:24
  SPEAKER_02: Christian got cocksacky, strep, staff, and never once did a doctor even ask me about this.
• 31:32
  SPEAKER_02: I always have to bring it up.
• 31:34
  SPEAKER_02: And then the testing, I forget it's a while ago, but the testing for the strep was tricky, and you would get a lot of false negatives.
• 31:41
  SPEAKER_02: And you also get false negatives with Lyme a lot, which people don't know, and so they think they don't have it, and then they have to do like the Western blot.
• 31:50
  SPEAKER_02: I think that's the second tier testing.
• 31:52
  SPEAKER_02: Yeah.
• 31:53
  SPEAKER_02: So I just think we're at a place which is inexcusable uh lack of progress and leadership from autism speaks in the NIH.
• 32:01
  SPEAKER_02: Um so it just reminds me of breast cancer a little bit.
• 32:07
  SPEAKER_02: Um we were spending tons of money on breast cancer and breast cancer survivors who are yet relatively young, active women, were like, this isn't good enough.
• 32:16
  SPEAKER_02: You're not making progress.
• 32:17
  SPEAKER_02: And they started to fund tons of their own research.
• 32:20
  SPEAKER_02: And the NIH was seeing they were having progress and they were going to be left behind.
• 32:24
  SPEAKER_02: And nobody was gonna be advocating for them to get research money at the NIH if they weren't producing, and so they had competition, and so all of a sudden the NIH research on breast cancer got a lot better because they were losing all support.
• 32:36
  SPEAKER_02: And if there's no political support for a disease or disorder, they'll lose funding.
• 32:40
  SPEAKER_02: So um that's what it took, and they're way they're like decades ahead of us.
• 32:46
  SPEAKER_02: Also, it's it's a i ironically, it's a lot less controversial than cancer.
• 32:51
  SPEAKER_01: Right, right.
• 32:53
  SPEAKER_01: I know I've had I can't tell you how many parents I've had tell me um some with two children, one with a cancer diagnosis and the other with a pans pandas diagnosis.
• 33:04
  SPEAKER_01: And they always say to me, gosh, cancer was a thousand times easier because the public perception was so much, you know, they're creating meal trains and donated to go fund me is, you know, when you call them like, oh, actually, you know, my child just threw a rock at my head yesterday.
• 33:25
  SPEAKER_01: Yeah, nobody cares.
• 33:28
  SPEAKER_02: You know, my sister had pretty serious melanoma to B, a three.
• 33:33
  SPEAKER_02: My dad had this cancer called Merkel cell cancer.
• 33:35
  SPEAKER_02: It's terrible.
• 33:35
  SPEAKER_02: It's like you have a 50-50 chance of living.
• 33:38
  SPEAKER_02: I don't think they had a look online one time.
• 33:40
  SPEAKER_02: The doctor diagnosed it.
• 33:41
  SPEAKER_02: He's like, he gave them like, I don't know, it was like a 10-point plan with like indentations and details, the big everything.
• 33:48
  SPEAKER_02: Like, and if this comes, if this doesn't work, we're gonna do this.
• 33:51
  SPEAKER_02: Totally laid out, and this works because this, and we have a subclinic that'll help you with this.
• 33:56
  SPEAKER_02: And with autism, for me and you, it sounds like I mean, we're like, okay, your kid's autistic, good luck, bye.
• 34:04
  SPEAKER_02: That's the end of it, right?
• 34:06
  SPEAKER_01: Yeah, I it's it's um, it should be the beginning of a conversation, right?
• 34:11
  SPEAKER_01: And it's the end of one.
• 34:13
  SPEAKER_01: It's the end of it, yeah.
• 34:14
  SPEAKER_01: And so, you know, I mean, I'm at the point now where I'm even telling my patients who are, you know, early stages diagnostic um, you know, tools are, you know, maybe helpful, but at the same time, a diagnosis is is not the end of the story.
• 34:35
  SPEAKER_01: And I think too many people, once they get a diagnosis, they think that that's it, we figured it out.
• 34:43
  SPEAKER_01: Dyslexia, yeah.
• 34:44
  SPEAKER_02: You know, okay, and there's a school for that.
• 34:46
  SPEAKER_02: And then we can he can learn to read after.
• 34:49
  SPEAKER_02: No, it's nothing like that.
• 34:52
  SPEAKER_02: It's so hard.
• 34:53
  SPEAKER_02: You know what?
• 34:54
  SPEAKER_02: Like that's why MAPS, we're talking about maps later, uh, is so great because they do CUs and they educate pediatricians and pediatric specialists and all the medical aspects of autism.
• 35:03
  SPEAKER_02: And that should be like a requirement, you know, for any pediatrician attends like one MAPS conference.
• 35:10
  SPEAKER_02: It would make such a difference.
• 35:13
  SPEAKER_01: Yeah, and you know, um, I think there's so much resistance within the medical community in general, um, primarily because you know, we know that it's a big conglomerate of pharmaceutical industry and education and all of these things work hand in hand, um, which then fund the research.
• 35:35
  SPEAKER_01: And if you know can't get funded, then what's the point?
• 35:39
  SPEAKER_01: Um, you know, um, but uh I think that's where the clinicians become even more important than the researchers because as clinicians, that's you know, that's where you make the difference.
• 35:55
  SPEAKER_01: Um, that's why I really appreciate the work that they're doing at MAPS and training uh new clinicians who then can go out and you know actually treat and care for patients.
• 36:09
  SPEAKER_01: You know, the research is important, of course.
• 36:12
  SPEAKER_01: You know, that's how we grow and learn new things and evolve.
• 36:17
  SPEAKER_01: But if the research being done isn't um, you know, if the data is skewed, if the you know sample size is skewed for whatever reason, then we're we're not gonna see the kinds of progress we would see.
• 36:33
  SPEAKER_02: Oh, we're not, we're not, and um, that's why we haven't.
• 36:38
  SPEAKER_02: Uh yeah, and also I always wonder as a pediatrician or as a clinician, don't you get frustrated with all these people coming back and saying, okay, I did everything you said and there's no progress.
• 36:48
  SPEAKER_02: I would find that to be incredibly frustrating.
• 36:50
  SPEAKER_02: And so I would welcome learning more.
• 36:53
  SPEAKER_02: Um, but I think there's some psychological aspect, like when you say autism to a pediatrician, they're like, genetic behavioral disorder, genetic behavior, you know, and they just shut it down because it's a whole uncomfortable subject.
• 37:04
  SPEAKER_01: Um Yeah, and I I think that has to come from the vaccine conversation because otherwise I don't see why there would be such a resistance.
• 37:14
  SPEAKER_02: Right.
• 37:15
  SPEAKER_02: They're hardworking doctors and they don't make a lot of money comparatively to like radiology, and a pediatrician works a lot of hours, and these people care about kids, but I think their whole organization, the AAP and medical school and everybody is just nailed it to their head.
• 37:32
  SPEAKER_02: Um, it's not vaccines, it can't be vaccines, vaccines are always good.
• 37:36
  SPEAKER_02: It's like a mantra.
• 37:38
  SPEAKER_02: It's you know, like I think this the uh health community did a great job with me growing up with smoking.
• 37:43
  SPEAKER_02: It was nailed into our head all the time.
• 37:45
  SPEAKER_02: Smoking causes cancer, smoking causes cancer.
• 37:46
  SPEAKER_02: So and I became like a zealot, and I forced my mother to stop smoking because I was like, a how that's anyways, but I think that's what happens to them.
• 37:55
  SPEAKER_02: Um, they can't go there, and they don't want to hurt kids, they don't even want to imagine that the stuff that they're doing could be hurting some kids.
• 38:03
  SPEAKER_02: So therefore, it's always the patient's fault.
• 38:06
  SPEAKER_02: Um, and the pediatrician who uh whom I called, um it's so weird.
• 38:12
  SPEAKER_02: Like she didn't take any notes.
• 38:14
  SPEAKER_02: The night I called like three times report Christian had 103 fever, and this shouldn't be this wasn't what she described could be happening.
• 38:21
  SPEAKER_02: And later, when I get the medical records, because I moved to the city, I look at it, she didn't know anything.
• 38:26
  SPEAKER_02: She didn't know that they don't, she didn't write anything down versus other times I'd call about like an earache or something, and they'd always record the call in detail.
• 38:35
  SPEAKER_02: But it's just like that, it's like a mental block.
• 38:38
  SPEAKER_02: They don't want to address the vaccine issue, not at all.
• 38:43
  SPEAKER_01: So I I I think it's like you said, I think they're terrified that something that they have done may have injured a child, right?
• 38:52
  SPEAKER_01: Um, you know, one child and maybe hundreds of children in their career.
• 38:58
  SPEAKER_01: So yeah, I do understand how you know debilitating that might be to make that acknowledgement and um how much uh grief and you know, um we live with that.
• 39:13
  SPEAKER_02: I mean, I live with that, not you, but I live with the fact that, you know, I didn't really I had a friend who's like maybe you shouldn't vaccinate.
• 39:20
  SPEAKER_02: I'm not vaccinating because of there's kind of these stories.
• 39:23
  SPEAKER_02: And I was like, blah, what does she know?
• 39:26
  SPEAKER_02: So I live with the fact that through my best efforts in parenting, I made a horrible mistake.
• 39:31
  SPEAKER_02: And I don't understand why they can't, well, they can't admit that, Eve.
• 39:35
  SPEAKER_02: They can't admit that, but yeah, you're right.
• 39:37
  SPEAKER_02: They just can't.
• 39:40
  SPEAKER_01: Well, I think it um it disrupts their whole paradigm in some ways.
• 39:46
  SPEAKER_02: Yes, yes.
• 39:48
  SPEAKER_02: And they're overwhelmed by pharma.
• 39:50
  SPEAKER_02: Like you go into their office and there's so much pharma stuff and the samples, and um they were you know taught that these are miracles, these vaccines, and I don't even think they're taught anything about the downsides or anything.
• 40:04
  SPEAKER_02: And if there's an inverse reaction, they always believe it's one in a million.
• 40:08
  SPEAKER_02: Like one in a million kids will die from an aspirin.
• 40:10
  SPEAKER_02: That's true.
• 40:11
  SPEAKER_02: So they just think, okay, that's a one in a million.
• 40:14
  SPEAKER_02: Um and they just uh it's very, very sad.
• 40:19
  SPEAKER_02: Yeah, maddening too.
• 40:23
  SPEAKER_01: Have you had conversations with um some of the researchers at NIH about vaccines in particular?
• 40:32
  SPEAKER_02: No, you can't even get there.
• 40:35
  SPEAKER_02: They will say asked and answered.
• 40:38
  SPEAKER_02: And there's something interesting too that I found.
• 40:41
  SPEAKER_02: Um, people who are generally overconfident about their abilities and what they know um tend to have discussions that don't go well with autism because they'll be like, this is my conversation with autism speaks, they'll be like, um, okay, it showed it's heavy, it's been proven safe over and over.
• 40:59
  SPEAKER_02: And I said, Well, actually, there's only like five studies that are cited, and two are 50 years old, and the other two, there was a safety surveillance going on for 48 hours.
• 41:13
  SPEAKER_02: That's it.
• 41:14
  SPEAKER_02: And I said, by everybody's account, this would never be okay today.
• 41:18
  SPEAKER_02: That would not be sufficient evidence.
• 41:20
  SPEAKER_02: And it's grandfathered in, and I said, and they didn't believe me, and of course they went back, it's all true.
• 41:26
  SPEAKER_02: And I said, Is that enough to make you feel comfortable?
• 41:30
  SPEAKER_02: Um, five studies two 50 years ago, two surveillance for 48 hours.
• 41:35
  SPEAKER_02: Is that really enough to make you feel safe that this should be given to every child?
• 41:40
  SPEAKER_02: They were shocked, they were just shocked, they never questioned anything, they don't look at the research at all.
• 41:46
  SPEAKER_02: They just say, so many studies have shown.
• 41:49
  SPEAKER_02: Like Dana Bash last night with uh Bobby Kennedy.
• 41:52
  SPEAKER_02: All right, Dana, let's see those studies that you know.
• 41:55
  SPEAKER_02: Let's see them.
• 41:56
  SPEAKER_01: Right.
• 41:57
  SPEAKER_01: Yeah, so right.
• 41:58
  SPEAKER_01: I mean, um, so for those of you who didn't watch it, um Dana Bash was speaking with Secretary Kennedy about the measles vaccine.
• 42:10
  SPEAKER_01: And um, you know, she she made several comments about, you know, measles vaccine being, you know, whatever the mantra is.
• 42:19
  SPEAKER_02: We also have an effectivity of causing vaccine hesitancy, which is ridiculous.
• 42:26
  SPEAKER_01: You know, it's so interesting to me because um, you know, I see people even on uh the side of the conversation that we're coming from who are very upset about Kennedy making comments saying um that the that the efficacy of the measles vaccine he's never questioned.
• 42:48
  SPEAKER_01: Right.
• 42:48
  SPEAKER_01: And I think it's important to really note that there's a difference between safety and efficacy.
• 42:55
  SPEAKER_01: And according to the actual definition of efficacy, we're looking at does it produce an immune response?
• 43:04
  SPEAKER_01: That's it.
• 43:05
  SPEAKER_01: And that's it.
• 43:06
  SPEAKER_01: There's nothing else.
• 43:08
  SPEAKER_01: So his comment there is factual.
• 43:10
  SPEAKER_01: Yes.
• 43:12
  SPEAKER_02: Did you die?
• 43:13
  SPEAKER_02: Did the child die on the table?
• 43:14
  SPEAKER_02: Is that the only thing that day we can measure that?
• 43:17
  SPEAKER_02: Did you die like a second after the vaccine?
• 43:19
  SPEAKER_02: That's the only thing, yeah.
• 43:21
  SPEAKER_01: Right.
• 43:22
  SPEAKER_02: Yeah, it's terrible.
• 43:23
  SPEAKER_01: Oh, yeah, it just um it is funny because you know, the vast majority of these arguments, you know, are an appeal to emotion.
• 43:32
  SPEAKER_01: They don't ever uh have scientific data.
• 43:36
  SPEAKER_01: No, just you know, no, um, there's studies to prove it.
• 43:40
  SPEAKER_02: And they just object on to us because they accuse parents of being over-emotional.
• 43:44
  SPEAKER_02: And I'm like, I'm really not.
• 43:45
  SPEAKER_02: I've had this conversation a hundred times, and you can see they're so uncomfortable.
• 43:50
  SPEAKER_02: So that's like the parent is is emotional, not thinking, looking for something to blame.
• 43:55
  SPEAKER_02: And so, like when I have that conversation with the autism speaks people about exactly what are the studies, they don't want to know.
• 44:02
  SPEAKER_02: They they just want to be out.
• 44:03
  SPEAKER_02: And so, Dana was Dana, why doesn't she just call herself Dana?
• 44:06
  SPEAKER_02: Dana was saying, uh, you know, like uh they all exist.
• 44:10
  SPEAKER_02: She couldn't cite one, and she was uh also, you know, she was lying because she said she was impartial.
• 44:17
  SPEAKER_02: She was sending Fauci questions for the interview days in advance.
• 44:21
  SPEAKER_02: She was accepting questions from Fauci to ask to set them up.
• 44:24
  SPEAKER_02: She's not impartial, so that's just not true.
• 44:28
  SPEAKER_01: Yeah.
• 44:30
  SPEAKER_01: So um I'm curious, have you ever been in a situation where there was an uncomfortable interview uh with a confrontational person?
• 44:40
  SPEAKER_02: Oh god.
• 44:42
  SPEAKER_02: Um I'm sure I used to do a ton of interviews when I was trying to help autism speaks, and I'd see someone in the background saying, Don't talk about it, don't talk about it, don't talk about it.
• 44:55
  SPEAKER_02: And you know, I didn't have an agenda.
• 44:57
  SPEAKER_02: If they were promoting like, you know, uh special needs playgrounds or something, I don't need to like bust out vaccine, vaccine, vaccine, you know.
• 45:05
  SPEAKER_02: Um but I told them I'm never gonna lie.
• 45:09
  SPEAKER_02: And um that would be a huge problem.
• 45:13
  SPEAKER_02: But yeah, when you're doing most people.
• 45:16
  SPEAKER_02: Who are doing an interview were just told what to believe, and they'll call Paul off it, and he will tell them all this stuff, and it's often very adversarial, but I would say to them, you know, listen, it happened.
• 45:34
  SPEAKER_02: What I it doesn't benefit me to uh have this nightmare in my child's life.
• 45:40
  SPEAKER_02: There's nothing I get out of this.
• 45:42
  SPEAKER_02: Um, it was horribly painful for me to realize that I trusted people with my son's life and I was wrong.
• 45:50
  SPEAKER_02: And I don't get upset.
• 45:52
  SPEAKER_02: And I think they're seeing more and more like it's the other side that gets very upset.
• 45:57
  SPEAKER_02: You're killing kids, you're doing very emotional, and they're unused to being challenged.
• 46:05
  SPEAKER_02: So yeah, I think they're right.
• 46:07
  SPEAKER_02: I think they get very emotional.
• 46:10
  SPEAKER_02: And the interviews are just the interviews usually just talk to off it.
• 46:16
  SPEAKER_01: Right.
• 46:17
  SPEAKER_01: Or they cut everything that happened with you and and um just you know defer to the experts, right?
• 46:23
  SPEAKER_01: Yes, yes, yes.
• 46:25
  SPEAKER_02: And I then I would ask them sometimes, I mean, why do you think I'm in this?
• 46:29
  SPEAKER_02: Like, what am I getting out of this?
• 46:32
  SPEAKER_02: You know, um I really there's nothing great about severe autism or and I'd show them the before and after video.
• 46:42
  SPEAKER_02: Um, and they're uncomfortable because it just it challenges what they think to be true.
• 46:49
  SPEAKER_02: They're very uncomfortable.
• 46:52
  SPEAKER_01: Well, Katie, I think the more people can see and understand, and the more that people like you and I can speak up for not only our children, but all of the children with these diagnoses.
• 47:06
  SPEAKER_01: Um, you know, I pray that it helps them.
• 47:09
  SPEAKER_02: Uh I know they're not alone because I often felt like I was the only one who had a child with severe autism, and they're not, and I know they're just exhausted and they barely have time to use a bathroom or shower.
• 47:21
  SPEAKER_02: And, you know, I just want them to know we're all behind them.
• 47:25
  SPEAKER_02: They're not alone, and we want their kids to get better.
• 47:30
  SPEAKER_01: 100%.
• 47:31
  SPEAKER_01: All right.
• 47:31
  SPEAKER_01: So I ask every single one of my questions or my guests eight questions.
• 47:37
  SPEAKER_01: Uh, these questions are designed to give us a little bit more information about who you are and what makes makes you tick.
• 47:44
  SPEAKER_01: Are you ready?
• 47:46
  SPEAKER_01: All right.
• 47:47
  SPEAKER_01: Number one, if you could choose only one natural remedy for the rest of your life, what would it be?
• 47:53
  SPEAKER_03: Oh gosh.
• 47:55
  SPEAKER_02: Um activated charcoal helped Christian a lot in the beginning.
• 48:03
  SPEAKER_02: And I was mother told me about it.
• 48:06
  SPEAKER_02: I'm like, I buy this at the natural food store and versus these$600 worth of drugs, and it's not helping.
• 48:12
  SPEAKER_02: So I probably would probably that one.
• 48:14
  SPEAKER_01: Yeah, nice.
• 48:16
  SPEAKER_01: Detox, detox.
• 48:18
  SPEAKER_01: Yeah, right.
• 48:19
  SPEAKER_01: All right, number two, tell us something most people don't know about you.
• 48:25
  SPEAKER_02: I don't know about me.
• 48:27
  SPEAKER_02: Um before this, I was a clinical director of a rape crisis center.
• 48:35
  SPEAKER_02: So, you know, I dealt with uh controversial stuff, and this is an analogy that's worth sharing.
• 48:41
  SPEAKER_02: Yeah, and part of my job was they would have interns from medical school come and spend like two days at the rape crisis center.
• 48:49
  SPEAKER_02: And they would, it was especially good because about half of them were foreign.
• 48:53
  SPEAKER_02: And no, I mean, we do a lot wrong, but we we educate doctors a lot better about sexual assault and how to speak to patients.
• 49:00
  SPEAKER_02: And it was very hard for some of them to talk about rape and talk, but I'm like, you're gonna see a patient at some point who has been a victim of a sexual assault or a rape, and you really need to get comfortable in a way, a non-blaming way, but in an effective way.
• 49:16
  SPEAKER_02: And we were able to speak about this and they they got there.
• 49:21
  SPEAKER_02: Um versus, you know, um, it's crazy that I can either have these conversations with doctors about, you know, anal sex or whatever, or it's STDs, but to talk about vaccines is what's truly um controversial.
• 49:39
  SPEAKER_01: Right.
• 49:42
  SPEAKER_01: A product that they're actually injecting.
• 49:44
  SPEAKER_01: Yes.
• 49:45
  SPEAKER_02: Right, exactly.
• 49:47
  SPEAKER_01: All right, number three.
• 49:48
  SPEAKER_01: If I were to compile a playlist of happy music, what song would you suggest be added?
• 49:54
  SPEAKER_02: Oh, I'm trying to think.
• 49:56
  SPEAKER_02: Something I was really proud, my husband and I were proud of.
• 49:58
  SPEAKER_02: We weaned Christian off the wiggles.
• 50:01
  SPEAKER_02: It was tough.
• 50:02
  SPEAKER_02: It was really tough.
• 50:03
  SPEAKER_02: But I I just I was gonna shoot myself.
• 50:06
  SPEAKER_02: Um so he really likes Jack Johnson.
• 50:10
  SPEAKER_02: Um happy music.
• 50:13
  SPEAKER_02: And um when he needs to calm down, it's like Enya.
• 50:17
  SPEAKER_02: For me, Happy Music.
• 50:19
  SPEAKER_02: Um he likes pot music, you know.
• 50:24
  SPEAKER_02: Um he liked I like the the early Katy Perry songs, they're very funny, like you're hot and cold.
• 50:33
  SPEAKER_02: Uh just funny pop music.
• 50:36
  SPEAKER_02: Uh you know that song, I think her name was Zara.
• 50:39
  SPEAKER_02: Um I've had it, or oh god, what's that song?
• 50:43
  SPEAKER_02: Anyway, I think about it.
• 50:44
  SPEAKER_02: But anything, anything that's funny.
• 50:47
  SPEAKER_01: Yeah.
• 50:47
  SPEAKER_02: Yeah.
• 50:48
  SPEAKER_01: Awesome.
• 50:49
  SPEAKER_01: All right.
• 50:49
  SPEAKER_01: What is your favorite guilty pleasure?
• 50:52
  SPEAKER_01: Oh gosh.
• 50:54
  SPEAKER_02: Um it used to be uh a New York housewife, that's for sure.
• 51:02
  SPEAKER_02: I've got to get back into it, you know, and it was so bad.
• 51:05
  SPEAKER_02: I'd have like one hour data myself and I would spend it watching that.
• 51:09
  SPEAKER_02: Um, so that probably my guilty pleasure.
• 51:11
  SPEAKER_02: Yeah.
• 51:12
  unknown: Yes.
• 51:13
  SPEAKER_02: Totally like there's no benefit from watching this.
• 51:16
  SPEAKER_02: I learned nothing.
• 51:19
  SPEAKER_01: This is not an endorsement.
• 51:20
  SPEAKER_02: No, no, but is it entertaining to me?
• 51:23
  SPEAKER_02: Yes.
• 51:25
  SPEAKER_02: And does it keep take my mind completely off?
• 51:28
  SPEAKER_02: Yes.
• 51:29
  SPEAKER_01: Right.
• 51:29
  SPEAKER_02: Yes.
• 51:30
  SPEAKER_01: Right, right.
• 51:30
  SPEAKER_01: That's the important part.
• 51:32
  SPEAKER_01: Right.
• 51:33
  SPEAKER_01: Number five, what is the most influential book you've ever read?
• 51:39
  SPEAKER_02: Yeah, probably.
• 51:40
  SPEAKER_02: I mean, um, he's dead now, but um David, oh gosh.
• 51:46
  SPEAKER_02: Um the first book about vaccines.
• 51:51
  SPEAKER_02: Um, I thought I'm totally liking out on the name, but it was the story of vaccines, and it was with um Lynn Redwood and her husband and Laura Bono, and um, he did this huge study of uh evidence of harm.
• 52:07
  SPEAKER_02: And it's a very long book, but I learned so much from it, and I'm still so grateful because I wasn't able in the beginning.
• 52:16
  SPEAKER_02: I'd read all these books about autism, and it was like nothing remotely like my son.
• 52:20
  SPEAKER_02: And evidence of harm really covered it all.
• 52:22
  SPEAKER_02: So I was so grateful.
• 52:23
  SPEAKER_02: I was sad to hear he recently died.
• 52:26
  SPEAKER_01: Yeah, well, I I had the pleasure of sitting with Lynn at a MAPS dinner and um, I think it was last year, and uh it was just uh amazing to be able to speak to somebody who's been such a staunch advocate for kids.
• 52:42
  SPEAKER_02: Such an inspiration and been through such a rough time.
• 52:45
  SPEAKER_01: Yeah, yeah, yeah.
• 52:47
  SPEAKER_01: She was amazing.
• 52:48
  SPEAKER_01: All right, what does the word revolution mean to you?
• 52:53
  SPEAKER_02: It means uh big change for the better.
• 52:57
  SPEAKER_02: Like I like this group called Thinking Mom's Revolution, where they talked about like we're gonna change, we're gonna change for the better.
• 53:04
  SPEAKER_02: Um, and people aren't gonna like it, but it's gonna happen, you know.
• 53:10
  SPEAKER_01: Absolutely.
• 53:10
  SPEAKER_01: It's gotta happen anyway.
• 53:12
  SPEAKER_01: Yeah, shout out to TMR.
• 53:13
  SPEAKER_01: I I wrote an article for them a long time ago.
• 53:16
  SPEAKER_01: But it's a great name.
• 53:19
  SPEAKER_01: All right.
• 53:19
  SPEAKER_01: What does the word remedy mean to you?
• 53:23
  SPEAKER_02: Remedy, I say it with like lessening symptoms and improving quality of life.
• 53:28
  SPEAKER_02: It may be not be the whole remedy, but like when we found um the remedy for um the eczema, you know, getting rid of the gluten, it wasn't the worst thing, but it was bad.
• 53:39
  SPEAKER_02: And he would wake up at night scratching his cheeks and just getting rid of gluten was like problems all.
• 53:45
  SPEAKER_02: That was to me like amazing.
• 53:47
  SPEAKER_02: Um, that was a great remedy.
• 53:50
  SPEAKER_02: And it doesn't have to be everything, but it really helped.
• 53:54
  SPEAKER_02: So something I'm grateful for that helped.
• 53:56
  SPEAKER_01: Absolutely.
• 53:57
  SPEAKER_01: And lastly, if you could impart one piece of wisdom onto our listeners, what would that be?
• 54:03
  SPEAKER_02: Trust yourself.
• 54:04
  SPEAKER_02: You know, if if you're not getting help, keep going and talk to other parents.
• 54:09
  SPEAKER_02: It's easier now because you can go online and watch a video from you know, autism one.
• 54:16
  SPEAKER_02: If try to find like what your like your GI issues and watch a dark doctor Arthur Kriegsman video and see if you can find somebody who you think, hey, that could help.
• 54:26
  SPEAKER_02: Um, yeah, because if you're told that this will work and it's not working, you know better than anybody.
• 54:33
  SPEAKER_02: So yeah, I would say trust yourself.
• 54:36
  SPEAKER_01: Absolutely.
• 54:37
  SPEAKER_01: All right.
• 54:38
  SPEAKER_01: So where can people find out more information about IAC and the work that Dr.
• 54:44
  SPEAKER_01: Vogel's been doing?
• 54:45
  SPEAKER_02: Oh my God, she's so great.
• 54:47
  SPEAKER_02: What we really need is for people who have a child on the spectrum or brother or sister who are a grandmother to go to IAC, I A C C Capital underscore, and then autism small.com, and they will be asking for comments.
• 55:04
  SPEAKER_02: There's a new plan, and this is the first time an AIAC plan, the first time the NAH has put out a plan to address regression, real medical issues.
• 55:12
  SPEAKER_02: Um pandas is in there, anti-NMDA receptor encephalitis, all these wonderful things.
• 55:21
  SPEAKER_02: And if we don't get enough comments there, they will be able to say, well, nobody wants this done.
• 55:26
  SPEAKER_02: So we've got I we all want this done.
• 55:29
  SPEAKER_02: We want research on pandas and regression and environmental exposures.
• 55:37
  SPEAKER_02: And it's all in the plan.
• 55:38
  SPEAKER_02: So if you can just go there and say, you know, this is what my kid doesn't have to be like a long thing, you need a couple sentences.
• 55:45
  SPEAKER_02: This is this is what affects my child, and I need to see it studied.
• 55:48
  SPEAKER_02: You know, that's all.
• 55:48
  SPEAKER_02: That would be very helpful.
• 55:51
  SPEAKER_01: Awesome.
• 55:51
  SPEAKER_01: Well, Katie, it has been a pleasure connecting with you.
• 55:56
  SPEAKER_01: So delightful to meet you.
• 55:57
  SPEAKER_01: Yeah, wonderful.
• 55:59
  SPEAKER_01: Well, thank you all for listening.
• 56:01
  SPEAKER_01: Uh, thank you again to Katie Wright, and uh, we will see you all next time.
• 56:05
  SPEAKER_01: Take care.