[00:00:01] Speaker A: Welcome to Shining Inspiring Voices of Autism with show host Jennifer Dantzler. My name is Michael and I'm on the autism spectrum. Thank you for taking the time to learn more about the world of autism. If you enjoy what you hear today, don't forget to subscribe to this podcast.
[00:00:16] Speaker B: Hey there 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 36 people, we need to get louder about this topic and that's our goal during this podcast. 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 interest. 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 podcasts, 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.
Hello all. I am here today with a special podcast episode that was unscheduled. As many of you know, rates have just been recently released from the CDC now saying that autism affects 1 in 31 people.
So I'd like to take a few minutes today to address a little bit of what I've seen and heard out there and really just talk about getting real about the rates of autism from my perspective. First, I'd like to give a special shout out to Joey K with DJ Brothers, our Houston's DJ specialist for all your types of events. As I had mentioned, this episode was unscheduled and at a very late night email last night for me where I was feeling pretty charged. He was very flexible and got me in first thing this morning. So thank you to DJ Brothers and your wonderful recording studio for helping me out on this. I have been in the field for over 25 years. I'm a board certified behavior analyst. I've worked in multiple states, in multiple types of settings, serving people on the Autism spectrum. And so what I can assure you what today's podcast is about is not about whether you're red or blue, right wing or left wing, what your political stance is. This is about autism and what's happening right now. As many of you might have heard, RFK Jr had released some information that there's going to be a huge push to do more research and he is targeting a goal of September to find the cause for autism. Now what I want to say is that whether you agree with that or disagree with that, there are a lot of things that are being put out there, some that are right, some that are maybe misinformation. But from my viewpoint, it's all good. We have got to start to get louder about this. Autism now affects 1 in 31 people. Polio affected 1 in 8,000 people. Why it even took to us getting to 1 in 31 I will never understand. One of the things I want to do is first clarify. There's a lot of controversy out there right now about whether autism is a disability, whether autism is an injury. And the first thing I want to say is for those of you out there who have high functioning autism or consider yourself on the spectrum in any way and you see your autism as an ability, as a gift, as a special talent, I fully support, agree, align with your beliefs. Most of who I'm here talking to today are the people that don't have that perspective. I'm talking to parents who might have a child who head bangs 30 times an hour, who might have a child who aggresses at their parents when they're frustrated because their iPad died or the Internet is out. I'm talking to the self advocate who leaves an event and doesn't understand why they're so overstimulated or why no one was talking to them. I'm talking to the families of the Victor Perez's of the world who tragically lost his life due to police engagement because he was outside in his yard and was elevated. And the police couldn't differentiate between was this a psychotic episode? Was he high? But unfortunately what it was was that he had gotten agitated and his autism looked like something that was a danger and police didn't understand that. So one of the things that we do at Inspire ND is do first responder training. And I beg first responders to get training from your local autism agencies because events like the tragedy of Victor Perez and so many others shouldn't have to happen. What we're talking about right now is the studies that are about to be happening. We're talking about the noise that's out there right now. So for any of you who have listened to this story yesterday or the announcement about all of this push for the autism studies, you know, I'm getting on this bandwagon because I believe that what people don't understand is that autism has increased. Whether you want to say from 1 in 10,000 to 1 in 31, or whether you want to say 1 in 10,000 to 1 In 50 or whatever number you want to throw at it, I am here to tell you that autism has increased greatly. When we think back to when we were in school, there might have been a few that were misdiagnosed with intellectual disability or just a pure behavior disorder, but there were not people with autism hidden in classrooms, hidden at home, or going under the radar. It is true that when the Asperger's diagnosis moved to just be within the autism spectrum and high functioning autism is the replacement for Asperger's, yes, that did add a few people to the mix. And yes, have we gotten better at diagnosing and knowing the symptoms? Absolutely. But I can also tell you, in my 25 years working with hundreds, if not thousands of people on the spectrum, never once have I worked with someone who was said to be autistic, who was not autistic. I have not worked with someone who had the label of autism, but was really just ADD or was really cerebral palsy, or was really down syndrome. There are more and more people with autism in the world today. And so I do not want us to get hung up on whether it's 1 in 31 or 1 in 100 or even 1 in 500, we need to start recognizing and not getting caught up in the politics of all this. One of the things that we're talking about a lot lately is that more and more kids are more affected with autism. And I'm also here today to tell you that it is true. There is a new alliance called the Profound Autism alliance that is an initiative to help bring more awareness to profound autism. It is estimated that a quarter of people on the autism spectrum have profound autism. And I'm here to say that it's true. It is real. The people out there with profound autism have many, many needs. And yes, they can be meaningful parts of their society and meaningfully employed and meaningfully engaged, but they need the supports to do that. They need the help, they need the awareness. They need the recognition. I've run my nonprofit now for about 23 years, and in the beginning of our nonprofit we had partnerships with local private schools. Whereas kids were ready, we included them into those private schools. At one point, we had over 15 of our little ones included into private schools who were ready to be in the classroom in ages 3, 4, or 5. Now, if I were doing the same service, we would probably have roughly three to four who might be ready to go into the classroom. So, again, I'll say it several times, this is just one person's perspective, but I can tell you that not only are the rates of autism getting higher, but the level of severity is getting higher, too. But our support systems are not there to match it. If people are questioning that the rates of autism are not increasing, just the diagnosis is increasing, then why is it that the public school numbers have not gone down, but now we have intervention centers on every street corner. When I started my nonprofit 23 years ago, there was myself and approximately three other clinics in the entire Houston area serving people on the autism spectrum doing early intervention. And then the public schools had the kids in their programs. But now the public schools are more crowded than ever, and there are literally now companies with multiple, multiple, multiple sites across cities and across the country because the need is there and the wait list is astronomical to get into these programs. These kids did not come out of the woodwork. They're not being misdiagnosed. The rates are increasing. But what's happening is we are getting caught up in weather. Leadership in Washington is saying this is an injury, and other people are saying this is a gift. Some people are saying this is a disability. Some people are saying this should fall under dei. Some people are saying this should not fall under dei. Frankly, I don't really care other than we need to have noise starting to happen, and I beg all of us to really start to get on board with getting involved. Talking to your legislators about what do we think should be researched, whether or not this is happening too late, and whether or not it's happening in the exact way you believe this needs to be happening. You know, I just researched last night about vaccines, and what we do know is we don't have any idea yet what is causing autism. We just simply don't. We're getting better at things like genetic factors, and there's been a lot of controversy over the MMR vaccine. I don't know if anyone's really looking at the amount of vaccines that are being given to a baby literally at birth. According to the CDC websites, you get two vaccines at birth. You get six at two months, you get five at four months, you get seven. At six months, you get one at eight to 11 months and you get nine and you at age one. So do that math. That is almost 25 vaccines by the age of two. Has anyone stopped and said, what if we put all of these diseases in a little child's body? Does that affect anything? I don't know. And I am for vaccines. And again, this is not a political conversation. But are we asking the right questions to the right people and in the right way? That's what I want us doing. Now. I would also like us, if we're going to be putting all this money into finding the cause for autism, I also beg us all from Washington to every state, can we also please be putting the money into the people who have autism? Now, even if we can find some kind of cause, whether it's an environmental toxin in combination with the genetic factor, that will be amazing, that will be life changing for the country, for the world, but likely we will not be able to undo the autism that is in people now. So we also need to stand up and demand for appropriate services, appropriate funding for teachers in the public schools to get the right support for insurance, medical insurance, to support programming that truly makes a difference in the world of medically necessary aba. There are many, many restrictions as to what you're allowed to do when you're doing this service. You're not allowed to take them in the community, you're not allowed to teach them academics. Well, help me understand then, how are we getting them ready to be meaningfully included in their community if we can't do those things? But I also understand that we could absolutely break the bank if this all falls fully under medical insurance to provide this service for a lifetime. There are no easy answers. And I think sometimes we get our blinders on and we want to make this a political discussion, but this is not a political discussion. RFK Jr referenced the fact that it will cost a trillion dollars a year in 2035 to support our people on the spectrum. And I'm here to tell you, yes, it will. It is very costly if children don't get the right intervention, if the adults on the spectrum don't get the right supports, yes, our jails are going to be overloaded, our streets are going to be overloaded. These people are not going to be meaningful, employed or engaged in their community. We still have so far to go with our understanding of what autism is and what autism is not. 40% of the people on the spectrum are nonverbal, but less than that have intellectual disability. So just because someone who Might be needing to use an iPad to communicate. Does not mean they do not understand you. Does not mean they cannot go to the grocery store. Does not mean they cannot hold down a job. I'm talking to the people out there who do have challenges. One of the things that RFK Jr. Also referenced was that families are getting destroyed. And there were a lot of comments on Facebook and social media about how ridiculous that is. I am here to tell you, yes, I have seen it firsthand. I have seen families have to separate. I've seen families have to put their 12 year old in a residential facility. I know families who have to redo their bedroom door and make it a solid door so that their child cannot get through their door so that all they can do is go in their bedroom so they can be Safe while their 23 year old is having a meltdown. I've seen parents who have been injured and have to been hospitalized because of their child. They're back doing it again the next day. They're doing everything they have to for their child on the spectrum because that's what they have to do and that's what these kids deserve the right to have. Please, I employ us as a community. Stop getting caught up in the politics of it. Start getting involved. How can you help? How can you help support that neighbor down the street who has that autistic child who won't come to the block party now because they're gluten free and they have restrictions on food? What can we do as a community, as the block? Can we have color coded plates so that the food that they can eat can be on one kind of plate? Can we not have the blaring speaker so that the child with autism is not overloaded? Can we have Thanksgiving dinners where parents and relatives who might not understand the child's autism not make the parents feel bad for when the child won't sit at the Thanksgiving dinner? There's so much we can be doing. There's offering to just babysit for your niece or nephew so that mom and dad can go get a break. We can be offering so much more support if we took our complaining and if we took the politics out of it and came together as one community, think how much better off we would be. For even my high functioning individuals, a lot of them will still say yes, this is a disability or yes, this is a hindrance for me. Unfortunately, high functioning autism and rates of suicide are highly correlated because when you see someone with high functioning autism, meaning they might have an extremely high iq, they're Very successful on a job.
[00:16:53] Speaker C: They.
[00:16:54] Speaker B: They know how to live on their own and drive, but they still don't get why they don't get the people around them. It can be very isolating. It can be very depressing. So let's not assume that because someone is very verbal, because someone is in college that they don't need supports, because many of them do. And again, for those of you who don't, I applaud you, and I applaud everything you're doing to advocate for yourself and for your community. But some of our people on the spectrum don't have that voice to advocate, or they honestly have parents who are afraid to advocate. Recently, I've been active in trying to pass House Bill 3096 to declare March 17 in the state of Texas Profound Autism Day. Sadly, I have parents who wouldn't feel comfortable going to testify because they're afraid that if they start talking about things that have gone on in the home, that they're going to have CPS or adult protective services called on them. But the reality is, sometimes it's just about survival. So do we need to figure out what is causing autism? Absolutely. Do we need to get a handle on what we can do to slow down the rates of autism? Absolutely. Are we being diagnosed? Not so much. Maybe a little bit. But that does not account for the extreme rates. I employ you all to get involved, get active. Those of you who have a voice that feel comfortable using their voice about what people on the spectrum need, use it. Those of you as parents that have any energy left in you to do it, let's do it. Let's get people talking. And these studies, these initiatives by Washington right now. Again, you might agree or disagree with some of the wording that he's using, but this noise has to happen. And I employ us all to stop focusing on the politics of it and start focusing on the action of making it happen. And as I said previously, what we really need to be doing is getting active and creating and building the supports that are needed out there right now for the people on the spectrum. I will be thrilled, thrilled if I'm out of a job in a few years because we have figured this out. But I won't be out of a job because there will still be people with autism in our community. So let's not get focused on only preventing, but let's get focused on treating and supporting the people in our community. 80% of people with autism are unemployed or underemployed. We need to change that stat. We need to get businesses understanding how they can effectively employ people with autism because they have some incredible talents. And you know What? There's a 96% retention rate when you hire someone with autism who can say that now in their businesses about most people in the world. The other thing I want to address is there's a lot of discussion about the term neurodiversity versus autism. And yes, we are using the term neurodiversity. Neurodiversity is in the name of my company, Inspire nd I believe in neurodiversity wholeheartedly and I truly understand why there are some people on the spectrum who don't necessarily want to be labeled with the same label as that lower functioning 23 year old that might not be toilet trained, nonverbal and still bites his hand when he's frustrated. And I also understand that if we can get the world understanding neurodiverse ways of thinking and just making a few modifications, there are so many more people, including those with ADHD and Tourette's and other neurodiversities that it will just help be so much more successful. And I am a full supporter of neurodiversity and our awareness, increasing our awareness of neurodiversity. But I also know that those people who are affected by autism moderately or profoundly don't want to be lumped into the same category. People with autism have autism. They have needs, often maybe greater needs than those with ADHD or ADD or Tourette's syndrome or any of the other neurodiversities. We need to not be watering down autism either. We need to be supporting autism for what it is. We need to be defining it correctly. Yes, there are stereotypes out there and yes. Are there people with autism that rock? Yes. Are there people with autism that hand flap? Yes. But there are also people who have other types of self stimulatory behavior and self regulating behavior that we need to understand as a community. So if you're employing someone with autism and you're starting to see some unusual behavior, maybe a little bit of jumping, maybe their voice is getting elevated, maybe their eyes start twitching more, that's a sign of anxiety and stress. You can help them right in that moment, but you can't if you don't know what you don't know. All that to be said today I am here to say please put our political parties aside. Please start getting involved in an effective, productive way. Get on the bandwagon for us to figure out what is going on. Because 1 in 31 with 1 in 20 boys this is here, it's real and we need to start doing something about it. Thank you for listening to my rant. So I'm going to close with this one last statement because after all I am a board certified behavior analyst. In the world of understanding behavior all behavior is maintained by good and bad attention. So frankly I don't really care if we're giving good attention or bad attention to this issue because we need to maintain this behavior of recognizing the rates of autism and recognizing the needs of our community. 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
[email protected] thanks for joining us.
[00:22:59] Speaker A: On Shining inspiring Voices of Autism. If you enjoyed this episode, be sure to subscribe, leave a review and share it with others who want to celebrate neurodiversity. Until next time, keep shining.
