[00:00:00] Speaker A: Welcome to Shining Through Inspiring Voices with Autism with show host Jennifer Dantzler. My name is Bryant and I have autism. Thank you for taking the time to learn about the world of autism. If you enjoy what you hear, make sure you like and subscribe and follow this podcast.
[00:00:17] Speaker B: Hey everyone, this is Jennifer Dantzler and I'm the executive director and founder of inspirend, a nonprofit whose mission is to create truly inclusive communities through education and engagement. The goal of this podcast is to shine a light on real people and their stories in hopes of inspiring others who are on this journey of autism. Either themselves, their child, their loved one, their co worker. I truly believe ignorance is not bliss and we cannot be inclusive communities if we do not understand the people in the community.
With autism now affecting 1 in 31 people, we need to get louder about this topic. We recognize that autism is a spectrum. There are a lot of people with a lot of different needs, a lot of resources available or none available. And we know that in every episode we can't meet everyone's needs for their specific interests.
However, we hope that in each episode you do gleam some kind of insight as to how you can help your child or yourself be a better advocate. And as we go through our podcast, our goal really is to address the entire spectrum, the various needs, the various environments that we're going to be in. And we hope that there's something in every episode for each one of you. So let's get started.
I am here today with a very special guest, Cynthia Singleton. I have known Cynthia for over 20 years. We've been trying to figure out exactly how long, but let's just say a long time.
[00:01:34] Speaker A: Yes.
[00:01:34] Speaker B: So, Cynthia, thank you so much for being here.
[00:01:36] Speaker A: Oh, I'm happy to be here.
[00:01:37] Speaker B: Okay, so we have a lot to talk to Cynthia about today because she wears many, many, many hats.
[00:01:42] Speaker A: Yes.
[00:01:43] Speaker B: So the first hat we're going to talk about is her hat as a mom to her son, Carl.
[00:01:47] Speaker A: Yes.
[00:01:47] Speaker B: So why don't you tell me a little bit about Carl, his diagnosis, when he was diagnosed, that sort of thing.
[00:01:52] Speaker A: Okay. Well, right Now Carl is 27. So we were on the early end. So the year that he was diagnosed in 2001, the rate was still one out of every 250 kids. But what's interesting, I had a very unusual diagnostic journey because at the time, the woman who babysat him while I was having my second child noticed that there was something off with what he was doing. So she called her sister in law, who was a pediatrician in Boston, described what he was doing. And the sister on said, hey, he's got Asperger's because he had some language. And then about a month later, I was commenting to her that he was just doing all of these strange things that I didn't understand. She said, you want to know what I think? And I said, yeah. And she said, well, and then she told me. And I was kind of shocked because I had never even heard of autism. This was in 2001. The very first thing is, I went down is the very beginning of the Internet, so there were hardly any websites up then. And I happened to find Tony Atwood's Asperger Australian site. And I did his Australian scale on my son and I said, yep, that's exactly what he's got. And then I happened to meet a woman at a Thomas the Tank Engine show who I found out later. She specifically stood close to me so that we would have a conversation. Conversation. Because she saw Carl and recognized autism in him.
[00:03:07] Speaker B: Interesting.
[00:03:08] Speaker A: And so when I called her and we had a conversation, it was a pretty pivotal conversation in my life because the first thing she said was, if you're going to get a diagnosis, like an official diagnosis, what are you getting it for? Because at the time, you couldn't really get very much with an autism diagnosis. In fact, really all you. You had to get other diagnosis. So we had to get like an expressive receptive speech disorder diagnosis in order to get speech services, and we had to get a lack of coordination disorder to get ot.
ABA was just out of pocket. So that didn't really matter. And then so she said, you know, don't go through the diagnostic process because you invest a lot in it. And then on the other side of it, at that time, they didn't have a lot for you. So nobody really saw Carl at his baseline.
[00:03:51] Speaker B: Okay.
[00:03:51] Speaker A: And I think had they done that, he probably would have been a level two or a level three because his behaviors were pretty severe. At the time. She was a university trained special education teacher. It was something that was in her heart. She really had a vocation to do it. And she told me that nothing in her university training had prepared her to teach her own son with autism. So don't expect anything from the schools. So that gave me something that I kind of have lived my life by, and it's given me a different perspective from a lot of people. They realize something's wrong with their kid. They go through the process. They go through the physicians. They think they're going to get something from the doctors. They think they're Going to get something from the school. But I was already hesitant on both of those areas, so we approached it differently. So we started ABA before my son even had a diagnosis and were doing a lot of things and also started some biological interventions too.
[00:04:42] Speaker B: Well, because back then, again, ABA was not covered from insurance. Right. And so you didn't really need a diagnosis because there was nothing stopping you. I do want to go back though, for a second and make sure for our new listeners, that is very different now. Right. As far as getting a diagnosis, you actually need to have a medical diagnosis in order to receive all the services that we'll talk a little bit more about throughout the podcast and ideally before the age of nine. And it needs to be medical, not just school district.
[00:05:08] Speaker A: Yeah, well, and school districts don't diagnose. That is a huge point that everybody needs to understand. School districts do not diagnose. They determine eligibility for the student receive special education services. Families oftentimes don't take advantage of having the school eligibility in addition to the medical diagnosis because they can be getting help on both sides. That can be very powerful for the kiddo because the way the law is in Texas, the student can be pulled out for any autism related service and they can get an excused absence for that. So for speech, for ot, for aba. And then that way the student can be getting double services. So what can be very effective for a young student is to go to school in the morning and do ABA in the afternoon where they're working on things that might have come up at school.
[00:05:54] Speaker B: Even more effective would be if the school and the ABA clinic work together collaboratively.
[00:05:59] Speaker A: But that's, that's a whole different podcast. That is, I mean, we've been, we've been wanting that. Fort Bend ISD actually tried that. They, they have a small class that they're doing that with. I'm not sure if that class is still in existence, but about three years, they started that where they were working with an ABA intensive and then rolling those kids into an inclusive kindergarten in first grade.
[00:06:21] Speaker B: As it should be. As it should be.
[00:06:23] Speaker A: As it should be.
[00:06:23] Speaker B: Okay, so for your son, I don't want to spend a whole lot of time here because we have a lot of things to talk about. But so then your son. So early intervention. So then you were doing aba, right? And then talk about sort of the rest of his schooling.
[00:06:34] Speaker A: Well, and the other thing is, because we were paying out of pocket, we were paying at the time, it was about $1,800 a month for 20 hours of ABA. A week. So I want to. This is another point I want to underscore because there is a knee jerk reaction. Get the 40 hours. And I'm putting those in air quotes of ABA. Not every child diagnosed with autism needs 40 hours of ABA. And in fact, I had even talked to one of the psychologists who participated in that Lovaas study. That is the one that the 40 hour recommendation comes from. And he said that even in the study, not every student received 40 hours of ABA. It really is dependent on the needs and the skill level. And what is the learning rate of the student who's in the program.
[00:07:15] Speaker B: Yeah, it's not cookie cutter. It shouldn't be cookie cutter.
[00:07:16] Speaker A: It shouldn't be cookie cutter. But a lot, a lot of physicians are treating it like that.
[00:07:20] Speaker B: The physicians are. And then, you know, from being a provider too, what's tricky, unfortunately, what it also comes down to is scheduling.
[00:07:26] Speaker A: Sure.
[00:07:26] Speaker B: Because you can't have one client at 18 hours, one at 19, one at 23, one at 27. Just from a scheduling perspective. Absolutely. I don't have the solution to that. But yes, from a medical diagnosis and prescription perspective, it should absolutely not be cookie cutter. All right, so you did your 20 hours.
[00:07:42] Speaker A: So we were doing 20 hours a week. And then in addition to that, we were kind of doing something simultaneously. The woman that I had spoken to who told me those other two things, she had also told me about the gluten free, dairy free diet. And so at the time, my son's diet was 70% milk. Like every week he'd drink a gallon of milk, a chunk of cheese, cottage cheese, a quart of yogurt, all of that. So we just cold turkey, took it all out and it was like lifting a fog from his eyes.
[00:08:07] Speaker B: Oh, wow.
[00:08:07] Speaker A: It was a pretty dramatic thing. And I thought, now I've got to do the dairy free, the wheat free, the gluten free. And for us, it made sense because I've always had reactions to dairy. My husband has always had reactions to wheat. So it made sense, sense for us to try the diet. We started implementing the diet. And the interesting thing was as we started to take the gluten out, his behaviors and his responses and he's like he was coming into our world, became so much better. But then he started to have really diarrhea. It's like putting him on the diet pulled back the curtain to this underlying digestive or GI issue that he was having that we weren't even aware of.
And then we started adding food enzymes. And then we went from using our ABA time just to get him to sit in the chair, to using it to teach him the Alphabet and getting him to have conversations.
[00:08:56] Speaker B: There's a lot of medical side. And the good news now, compared to 27 years ago, there is more information and more research. We're still not fully there. Parents ask me all the time, should I do the dairy free or gluten free or the dye free or the various sundry things. I said, you know, you have to try what you need to try. And the key is seeing if it's effective for your child.
[00:09:13] Speaker A: Well, what I really recommend is that you everybody read the Adams study. That was from 2018. Now, Jim Adams from the University of Arizona worked with Julie Matthews over a course of about six months. They implemented several things that most people do. So they implemented giving Epsom salt baths. They implemented giving these vitamins. They're called Autism Nutritional Research center vitamins that he's done several studies on that are specifically designed for deficiencies we see in people with autism. And fish oil, adding that. And then they added the gluten free diet. And they looked at this over the course of the year, the cohort, I think There were about 30 study participants aging from 5 to 50. They had an average of a 7 point rise in their IQ. The study cohorts gained 18 developmental months versus the control group.
And so we know that these interventions have a lot of impact. Now, Julie Matthews is the founder of something called Nourishing Hope, and she's a nutritionist. She has done a lot of work in this area and has found that it really needs to be individualized, like gluten free, dairy free is a starting point. But are some kids who need a specific carbohydrate diet or a fodmaps diet or. And so she has found that There are about 13 different variations of the diet that you can look at that your child may need on that. So I really recommend that you also put Julie Matthews on your map of Nourishing Hope and read what she's done and the work she's doing in this area because it makes. Makes a big difference.
[00:10:42] Speaker B: So you went on both these journeys, sort of the biomedical and the ABA journey through his schooling years?
[00:10:48] Speaker A: Yep.
[00:10:49] Speaker B: Okay. What was probably one of the hardest things, looking back now, now that he's 27, that you had to navigate the
[00:10:57] Speaker A: school system in the time that he was in some kind of school system, he had 13 different school placements. We never really found a good place for him. He was in probably about three elementaries. He was in one Junior high the longest. But then when that fell apart, it fell apart in a big way. And then he was in four different high schools and a transition placement that was also different. So the schooling part was really, really hard for us. We were on the beginning edge. And then also because he'd had the early intervention, he wasn't in either group, really. He was. The services for the people who had more challenges weren't enough for him, but he was never quite on an even keel with his same age peers. He could do the work academically, but the schools, just what he needed was a general education curriculum in a small group setting of about five to 10 students. And there was nowhere we could get that in Houston isd. I mean, I remember sitting down with the manager for high school placements and we looked at 30 potential placements in Houston and none of them fit.
[00:11:58] Speaker B: Okay, wow. So is that what also started to prompt your advocacy career?
[00:12:03] Speaker A: No, what prompted my advocacy career was that initial conversation with the teacher who told me that there that she, in her training to be a special ed teacher, wasn't prepared to teach her own child. So you had to really advocate for your child for them to get what they want to make sure that the teachers get the extra training. And what people don't realize is teacher training still hasn't changed a lot since 2021. It's pretty rigid with what the teachers are having to take in a regular course. Even if they are a degreed special education teacher, they're getting one class on low incidence populations is where autism falls. That means in that four years, they're getting one specialty class that may only cover like a month on helping a student with autism. This is a huge message for everybody out there, especially since COVID because we've had so many experienced and trained teachers leave the field and being replaced by new people or long term subs or people who have even less training that you have to really ask to see what that teacher's training is for autism. Do they understand how to implement a positive behavior support program?
[00:13:07] Speaker B: Yes. So for our parents out there, I think what we're trying to say is don't assume no news is good news.
Right, Right. And really that you do need to become your child's own advocate. Not to get overwhelmed by it, but to just know that you need to be a part of the process. Right. And be able to understand everything that's talked about at the ART to probably bring your own suggestions into the ard, possibly bring in an advocate to the art, because that's part of what you do, right. That is you help supportive family.
[00:13:34] Speaker A: Yeah, that is one of the things that I do. And it's so important that parents are able to do what I call take their seat at the table because if they come trusting that the school's going to do everything and they get lost in all the acronyms that are getting stated at the table and the paperwork and oh, we have to do this, then they're just really there to sign at the end. Just like the administrator is there to read the assurances, but doesn't really participate. I mean, the parent has the right to give input to the IEPs. In fact, in all of the ARDs that I have participated in, like the hundreds if not thousands of ARDs I participated in since 2004, I would say I have never noticed, rewritten the IEP goals that have been suggested to me by the school district because most of them aren't measurable.
[00:14:19] Speaker B: Right. Well. And that's it. And I know criteria is always a thorn in my side too because they'll say 80% mastery with three prompts and I'll have to explain to the parents. So that means not at all.
[00:14:30] Speaker A: Right? Right.
[00:14:31] Speaker B: Three prompts Means. Does not mean independence.
[00:14:33] Speaker A: Exactly.
[00:14:33] Speaker B: Our parents don't know this. They were thrown into this. And the district isn't always going to tell them what that really means.
[00:14:40] Speaker A: Oh, frequently doesn't. And I am told by teachers who really want to do a good job that they are told not to tell parents unless parents ask. And parents don't understand how much power they have at the R table. The most powerful advocacy I did was getting the teachers the tools they needed so they could do their job better. Like more support in the classroom or going to a training conference they really wanted to go to.
[00:15:02] Speaker B: Probably over the years you brought the supports and the resources to these teachers because there are some incredibly, well, meaningful, wanting to do the best teachers. Absolutely. Just literally not getting given the reasons to. Absolutely. So as parents, you can at least expose them. You know, we're not asking you. I'll go out and buy, you know, a thousand dollar curriculum. But at least exposing them, bringing in snippets, you know. Yes. Exposing them to conferences and all those things. Right?
[00:15:24] Speaker A: Yeah, well, yes. And also advocating for your child. So actually giving a copy of your child's accommodations to each. If you have a child who's in more general ed classes, making sure that each one of those gen ed teachers actually has a copy of the accommodations. I talked to my cousin who's a new teacher and he said that he sees that there are some kids who are marked as special ed, but he has no idea what that means. Like, nobody from the district has come to give him a list of their accommodations. He doesn't know how to work with them, what extra help they might need.
[00:15:52] Speaker B: Right. And I know I have a parent, I think you know her too, but who had two children on the spectrum. One of the best things she ever did was create an All About Me book. Yep. And especially once they started getting to middle school, high school, where it was a variety of teachers and then they put in the art that that All About Me book had to be passed around and signed by every teacher each year and that she updated it each year. Their most recent likes, dislikes, challenges, things that worked, things that didn't work, hobbies, things that they might not be able to verbalize were things that maybe the teacher could prompt. Why don't you write about this interest of yours this week? Right.
[00:16:24] Speaker A: Absolutely.
[00:16:24] Speaker B: She saw a tremendous effect from that as far as the teachers buying and understanding, but she had to do that.
That was her doing well.
[00:16:32] Speaker A: And one thing that I write in for all of my clients who have kids with autism is I use the autism supplement under teacher training to include a staffing, a mandatory staffing at the beginning of. And you have to remember that the district usually has programmed a lot of trainings for the teachers. And so unless you write that in to the IEP that it's got to happen, it won't happen.
[00:16:52] Speaker B: Okay. Yes. It's got to be written verbal. Might as well have not happened. Right?
[00:16:56] Speaker A: Yes. Verbal promises are as good as the paper they're written on.
[00:16:59] Speaker B: Okay. I'm gonna remember that phrase. Love it. So Carl's now 27. Yes. And what's he doing?
[00:17:04] Speaker A: He is in between jobs at the moment. He was working for H and R block as a tax preparer. So he was really excited about that. He actually had a client that he serviced on that he did a lot of training. We had a bit of a journey with him as we were coming out of transition, because when I was looking at him, I took his interest in sports and his abilities in math and said, okay, let's do sports business. With the plan that we were going to start at Houston City College, get him an associate's, and then transfer on to Stephen F. Austin and Nacogdoches for their degree. We realized as we were going through that he was really struggling to do a full load in college. The max he could do was three classes, and it took him four years to do his associate's degree. And so we changed our plan along the way. And also because he found out he liked accounting of all of his classes. So when he got his associates, we said, okay, that's enough school. He started working with my husband's company to do accounts payable. We did an internship with the city of Houston where he worked with the comptroller's office just to do. I think he was reviewing travel reports.
And then he's done some other accounts payable things. And then he found out about this tax job and he signed up for there. So he's starting to get a little bit into taxes.
[00:18:14] Speaker B: Okay, okay.
[00:18:14] Speaker A: So he wants to work as a part time bookkeeper.
[00:18:17] Speaker B: I know he does struggle with some behavioral challenges.
[00:18:20] Speaker A: Yes.
[00:18:20] Speaker B: So talk about that a little bit.
[00:18:22] Speaker A: Well, it's really tricky because we have seen that about every six to eight months he will perseverate on some thought that leads him to have a big blowup where he becomes violent with us. He can destroy property, he can hurt himself. And it's something that we can't ever seem to get an answer for. These episodes first started when he turned 13 and he got an Adam's apple. And it came with that rush of adolescent testosterone. And so that's when we started seeing a psychiatrist for the first time and started on trying to find different medications that would help. And over the period of a decade, we went through 14 different medications and none of them really had. What we have right now is we have a medication that manages his low level anxiety. And then we have a kind of a stronger knockout drug for those infrequent incidences.
[00:19:12] Speaker B: Right. The PRN or the as needed type situations.
And I think that's the hard part too, because, like, we'll call these in clinical terms, low frequency, high intensity behaviors. And those are the hard ones. Right. Because he has so much ability, Very verbal guy, very capable guy.
[00:19:27] Speaker A: But it's funny, kind enchanting. Like every therapist who's ever worked with him has always come to me and said, you know, I'm not supposed to say this, but he's my favorite one.
[00:19:37] Speaker B: Yeah, yeah. I mean, and so you know, that's tricky on how you create or build that life for him, you know, with what kind of supports? Because they need to be supports when needed.
[00:19:46] Speaker A: Right.
[00:19:47] Speaker B: But not when.
[00:19:47] Speaker A: Not exactly. And I will say, in the state of Texas, it's almost impossible to find. I mean, what we did do because we were on the verge of trying. Like in 2021, things went downhill because one of the Medications we tried actually cognitive damage. It caused him a 20 point drop in his IQ because it decimated his working memory. And so we found this organization in Australia that was started by a geneticist mom of two individuals in the spectrum where they're looking at nutrigenomic data and they're developing an individualized supplement system. So by using that system which was individualized to him and based on his genetic variations on they looked at like his vitamin B, the enzymes, the anxiety pathways, the mitochondrial pathways, sulfation pathways, all of that that's involved and came up with an individuated supplement program for him. And using that we were able to recoup the 20 point IQ loss.
[00:20:40] Speaker B: Okay, that's amazing.
[00:20:41] Speaker A: And he became more social, his executive functioning skills improved, he was able to plan more. And so on this last go round that we had in November where he injured himself pretty badly, we started something called, we're exploring a new evidence based therapy called photobiomodulation which is using near infrared light. It's on a headset. On the head it looks like the cap you would put on if you're getting an EEG or it looks like a bicycle helmet with some discs on it and it puts red light in. And it specifically helps individuals who have the profile of perseverating or getting stuck on a thought. And we've seen that he doesn't get stuck as much on thoughts. It's really helped with this flexibility. But we're coming to the end of that because it's like a 12 week treatment period.
[00:21:24] Speaker B: Okay, okay. And for all of you listeners, don't panic at the end we are gonna to tell you where we can find Cynthia because she's talking about a lot of different resources out there. And so we will be able to get you in touch with her. Do not panic, do not worry. So he's trying to figure that stuff out right now and you're still advocating and helping. And I think hopefully what our listeners are hearing is that it's a little bit of everything. Right. You need to be an advocate in school, you need to look at the medical side because we do know that's very individualized for our people on the spectrum.
[00:21:51] Speaker A: Yes. The biggest thing is that you cannot expect hand your kid over to anybody and expect that they're going to fix them because this is a lifelong journey that you're doing with your child. And the more involved you are, the more you're able to articulate what your child or your teen's needs are, the better you're Going to be able to advocate for them and find the services that really help them.
[00:22:13] Speaker B: Okay. So I know also fairly recently you found a new approach to social skills and you're doing a lot with it. So tell me about that.
[00:22:21] Speaker A: This kind of came out of the blue. Through a family connection, Carl was given a. A group of 10 lessons on a virtual reality platform called Charisma that was developed at the center for Brain Health at UT Dallas. And they've been working on it since 2008 and they've done several studies on it. And it uses a role playing game format to target conversations that are practicing using nine different dynamic social skills strategies. And I didn't think it was going to generalize, but boy, were we surprised.
[00:22:51] Speaker B: Okay.
[00:22:51] Speaker A: The biggest thing that we saw is that we had a social event when he was on, like lesson, I think eight, and it was a big party with friends. He knew probably about a third of the people there. Usually when we go to events like this, he's ready to go in an hour. But at this event, he was going, he was engaging in small talk. He was comfortable talking to people. And we ended up staying five hours at the party.
[00:23:13] Speaker B: Wow.
[00:23:14] Speaker A: And he enjoyed himself. Usually after about an hour, he would have had enough and he'd feel nervous and uncomfortable.
But now it shifted. Using these strategies that he learned in Charisma, he shifted to being able to enjoy and participate in the party with everybody else.
[00:23:30] Speaker B: That's incredible. I know. We did a demo and basically I get on my computer, you get on yours. I'm the character and you're the facilitator. Is that the right word?
[00:23:39] Speaker A: Right.
[00:23:39] Speaker B: And then you take me through. You took me through scenarios. Right. Walking into a coffee shop, various scenarios. And then you basically help facilitate what I should be doing.
[00:23:50] Speaker A: Yes. And so you came in and you built your own avatar. And then I had a coach avatar. But in the world, there are many other avatars. And so I played each of the other avatars and I used voice morphing software to sound like a man or a teenage boy or a younger girl.
And so the client is having conversations with characters who sound like a teenager. So they buy into it, having a teenager. So what we always saw that were limitations of in person social skills is if you're role playing with that, like my son, he would role play having a conversation with the speech pathologist. But in front of him, he visually saw the speech pathologist. So he wasn't. He couldn't really generalize it earlier. But in the game, what we saw is that he really buys into these characters and he, like, wants to have a conversation with Maddie, and he had a relationship with Mrs. Miller, one of the teachers there. So he bought into them as characters. Theoretically, he knew that the coach was playing all of the roles, but he developed relationships with those characters within the game and practice using the skills. And so the session is set up so that they have four conversations that are followed up by mini coaching sessions. So they have a conversation, there's like a coaching recap, another conversation, a coaching recap.
So they're practicing that skill in four little mini sessions. As you were.
[00:25:11] Speaker B: Okay. Well, it sounds amazing. It was very impressive to see and I could see why that would be successful. So that's a service that people can sign up for or.
[00:25:19] Speaker A: Absolutely.
[00:25:20] Speaker B: You know, like, so through. You are one of the.
[00:25:22] Speaker A: So I was so impressed with it that I went through the training to become a charisma certified coach. I was. I was helping them out with a little bit of marketing because I'm like their client avatar. I've been trying to find social skills opportunities for Carl since he was 5 years old. So we've done camps, we've done social skills classes in schools, we've done private speech, one on one and in group and observations and all of these other things for him. Inclusive summer camps. Anything that we could do to get him into the community. Because I was always what I call a radical inclusionist.
[00:25:56] Speaker B: I love that. I love that. Radical inclusion. Well, it's very obvious. You are truly master of a lot of things. I don't really know how you. How you find the time to do all these things. And I know you speak and you've done workshops for us. I believe one of our workshops is on our website that you did for us in a lot of the school advocacy piece. So again, we can't impress upon that enough. Right. How important that piece is.
[00:26:16] Speaker A: It absolutely is important. And if you aren't. If you have a student in special ed, you should be spending at least one hour a week learning something about special ed advocacy. Especially now, because the funding formula for special education in Texas is in the process of changing. So there was a big bill that was passed last year. Right now, special ed is funded through programs. So if your kid goes to life skill, they get one level of funding. If they're in the general ed population with an aide, they get another level of funding. Now those funding streams are. And the way they're calculating the funding is changing, and it's all going to be tied to services. And personally, I'm not in favor of this. It was some advocacy that was done by the arc and they're really happy about it because they wanted the bill passed because they were seeing kids getting locked into programs that were inappropriate and they saw that the schools were thinking about services as programs instead of services that are supposed to be across the continuum. And so this is an effort to change that. But I think it's going to result in a lot of confusion on the part of the parents and the schools and denial of services that need to be happening.
[00:27:19] Speaker B: Okay, so to that point, an hour a week on your child's schooling, Partners
[00:27:23] Speaker A: Resource Network needs to be. You need to be on their mailing list at least. They give wonderful trainings on a regular basis, bring in lots of wonderful experts. But it shouldn't stop there.
[00:27:33] Speaker B: Okay. Partners Resource Network. Love it. Okay, Last thing I always end with is what's one piece of advice you would give right now to a parent of a newly diagnosed child?
[00:27:42] Speaker A: My favorite piece of advice most of your other moms have given, which is like, trust your gut. The next piece of advice that I would give is don't ignore the biology. There is a biological basis to autism. I firmly believe that. We're starting to see in the research now that they're going to be identifying biological markers. We know from other research that there is a strong gut brain connection and that the gut figures prominently in autism. We just, we still are learning those mechanisms. So please, please, please, don't ignore the biology. At the very least, do the autism nutritional research, vitamins and the fish oil. Because, because those are vitamins that have been studied. The recipe has been refined specifically for people with autism.
[00:28:21] Speaker B: Okay, well, and I think that's so important because while it's getting better, I've had so many families who will go to the neurologist or another doctor and the doctor will say, well, it's autism. Right. And they don't try to treat, you know, constipation is not autism or diarrhea. Diarrhea. Right. I mean, any, any of those things. Right, right. There are underlying factors to your point. But the problem is our parents will set an appointment with the neurologist for nine months from now. They'll go to the neurologist. Right. And It'll be a 30 minute appointment. And they'll come out of that with, well, they're gonna do an EKG. Okay. They'll do a 20 minute EKG, which will probably not show anything initially. Right, right. And then the parents say, well, they believe they did the medical side because they trusted the doctor. And so, you know, with all that said, if you're going to a doctor who's not really listening or hearing you or being proactive in turning over every
[00:29:07] Speaker A: stone or even more than that, if you're going to a doctor who didn't really have specialized training in autism or didn't participate in the lend. So there's something in all of the Combating Autism dollars began to fund something called the Leadership in Education for Neurodevelopmental Disabilities. And the acronym is lend. And so that money is funding. I think now it's up to 65 sites throughout the country where they are training medical residents and graduate students in the interdisciplinary needs of people with neurodevelopmental disabilities. And if you have a physician who doesn't even know what that is, find somebody else.
[00:29:44] Speaker B: I know another one is echo, which I think the Profound Autism alliance helped
[00:29:48] Speaker A: facilitate starting and then the other one is maps. Is the MAPS doctor, although there's an acronym overlap, unfortunately with the doctors who are looking at psychedelic drugs. So you got to be careful with that. If you're doing. We'll put the website on there. But the MAPS doctors are the ones who are clinicians who have been treating these complicated cases, trying to figure out, okay, what are the metabolic underpinnings of what's going on in these kiddos.
[00:30:12] Speaker B: Okay. Okay. So like I said, I know we discussed a lot of ton of resources because Cynthia is a wealth of knowledge. We will put all those in the show notes. We'll put links to things in the show notes, including where we can find you. But in the meantime, where can we find you?
[00:30:25] Speaker A: Come to my website at www.advance-well.com and I have a contact me on there. So if you email that you can find me. If you do a Google search for advocate, well, you'll come up with my Google site. I'm there too.
[00:30:37] Speaker B: Okay, wonderful. Well, Cynthia, thank you so much for being here. I feel like we could do 15 different episodes on all the different things. And so at this point, it's just to try to be a touch point for all of them.
[00:30:46] Speaker A: Sure.
[00:30:47] Speaker B: But thank you so much for being here.
[00:30:48] Speaker A: You're very welcome.
[00:30:49] Speaker B: At McAlpine Interests, we believe strong communities grow when everyone has the opportunity to thrive. Based in the Lake Houston area, we specialize in commercial real estate, brokerage and property management across greater Houston, helping businesses lease, buy and sell the spaces where they can succeed. We're proud to support inspirend and their mission to increase awareness, understanding and inclusion for the Neurodiverse community. Learn
[email protected] McAlpine interests looking after your best interest interests. If you need help or resources. Whether you're a parent, someone on the spectrum, a business or a community organization who want to know more or need help or want to share resources, please reach out to us at Info.
[00:31:39] Speaker A: If you enjoyed this episode, be sure to follow us, leave a review and share with others who want to celebrate Neurodiversity. Until next time, keep shining SA.
