Tony Mantor: Why Not Me the World
Autism is a complex neurodevelopmental condition that affects millions of people worldwide.
It is characterized by difficulties in social interaction, communication, and repetitive behaviors.
Although autism is becoming more widely recognized, there is still a lack of understanding and awareness surrounding the condition.
As a result, many individuals and families affected by autism struggle to find the support and resources they need.
Why Not Me The World podcast aims to bridge that gap by providing valuable information and insights into autism, fostering empathy and understanding, and promoting acceptance and inclusion.
Nashville based Music Producer Tony Mantor explores the remarkable impact his guests make by empowering their voices in spreading awareness about autism and helping break down the barriers of understanding.
Join Mantor and his guests as they delve into the world of autism and mental health to explore topics such as diagnosis, treatment, research, and personal stories.
Together, we can create a more informed and compassionate society for individuals with autism.
Tony Mantor: Why Not Me the World
Carol Nesteikis: Autism and the Justice System
Carol Nistakis shares her family's painful journey through the justice system after her autistic son was manipulated into illegal activity by a neighbor.
Her decade-long fight for justice led her to cofound D3, an organization helping families navigate the unique challenges autistic individuals face in legal proceedings.
• Began advocating when son was diagnosed at age 2, ensuring proper education and support
• Son functioned at age 10 level but was active in Special Olympics and held a part-time job
• 2012 incident led to 19 felony charges that were eventually reduced to one misdemeanor
• Court showed little interest in son's diagnosis despite extensive documentation
• Plea deal resulted in 2 years probation and 10 years on registry
• Son lost access to Special Olympics, recreation activities, and eventually his job
• Family was separated as son could no longer live at home due to restrictions
• Financial burden depleted savings meant for son's long-term care
• After 10 years, Carol secured a pardon and expungement without legal help
• Advocates for special courts with judges trained to understand autism
• Stresses that behaviors are manifestations of disability, not criminal intent
• Current autism rate is 1 in 31 children, making justice system reform urgent
Tell everyone everywhere about Why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.
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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)
Welcome to why Not Me? The World Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantour.
Speaker 1:Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Joining us today is Carol Nistakis, vice president and co-founder of D3, an organization devoted to supporting autistic individuals navigating the complexities of the legal system. Her journey began with her son's challenging experiences within the justice system, which exposed the unique struggles faced by autistic individuals and their families. These deeply personal encounters inspired her to advocate for systematic change, provide resources and offer guidance to others facing similar obstacles. She's here to share how her experiences shaped her family's path and fueled her commitment to transforming the legal landscape for autistic individuals. It's a pleasure to have you here, carol. Could you tell us how these events sparked your journey and led to your advocacy?
Speaker 2:Ever since my son was born, probably, there showed signs that there was something not quite right. So when he was two I already started having him tested. So I became an advocate because I had to make sure that he got the best education that he could get in the schools. That being said, I had to educate myself. I had to educate myself and learn about all his rights. I had to make sure he had the proper IEPs for school, his educational plan. I had to make sure I was at all the meetings. I made sure I was at the schools observing and volunteering all the way through, at least through grade school, because high school is a little bit different. You're not able to be as involved in there, but I was as involved as I could be. So that is how I became an advocate, first of all for developmental disabilities.
Speaker 2:My son has an intellectual disability. He has a lot of autistic characteristics but he functions as about 10 years old. How old is he now? He's 38. So he's not going to function at any higher level than that. You know there are some people on the spectrum that you know are very intelligent and it all has to do with behavioral process and differences in the brain and there's been a lot of research done on that. So they know that there is a difference in the brain of someone with autism, someone who's neurotypical. So I did advocate for him all the way through, even when he got a job that had to go through a human resources department and he had to have a job coach, and a job that had to go through, you know, a human resources department and he had to have a job coach and a job administrator. So even after he became an adult, I advocated for him.
Speaker 1:So he was able to work then.
Speaker 2:You know, he worked in a small part-time job and did Special Olympics and he did special recreation, where he did activities with his peers. I thought you know everything was okay. But there was a neighbor next door who had some disabilities also. He lived next door and he manipulated my son into doing something he shouldn't have done and police were involved.
Speaker 1:How long ago was this that this happened?
Speaker 2:That was in 2012. So my son was 25 then and police became involved. Then we started our journey I should say nightmare, not journey in the systems for the next year. I had a couple attorneys, but I also had good support. I had good support attorneys, but I also had good support. I had good support. I had a retired assistant district attorney who was with us all the way through, and another friend who was an attorney and we were supported by, you know, family, friends and you know coworkers and things like that. So, but in the end, he did have to take a plea deal, which seems to be the case for just about all of these kids. Even though you know we submitted evaluations and paperwork and documents and medical forms. They really didn't take any of that. They realized it because they never even asked my son a question at all. Zero questions in court. They never asked him anything. They never. You know, everything went through the attorneys. He didn't even speak at court, he just stood up there.
Speaker 1:So it's pretty obvious they didn't give the attention to his autistic diagnosis that they probably should have. Did you get any reasons for that?
Speaker 2:Basically because, well, prosecutors are there to win their cases and nobody's really educated even trying to find an attorney to, you know, defend us. They were very sympathetic. We had two attorneys. They were very sympathetic and they were willing to make sure that. You know, they took this into consideration, but you know the court's not educated. So I don't really even know how much the judge knew, because the prosecutor had all the documents and everything and you know you have to wonder does the judge even know what's going on here? Because it seems like the prosecutors have all the power.
Speaker 1:So, once the verdict came down, what was the result from that?
Speaker 2:Well, we took. Actually, you know, in the very beginning they had him charged with 19 felony charges and by the time we were done, we pled down to one misdemeanor charge, which gave him two years on probation and 10 years on the registry.
Speaker 1:So before that you said he was in the Special Olympics. Yes, what kind of competition did he do with that?
Speaker 2:Oh, he did everything. He did bowling, swimming, he did powerlifting, he did bocce ball. He pretty much involved himself in everything that he could do because physically he was fine. So you know, he played softball and lots, of, lots of activities.
Speaker 1:That's great that he enjoyed that. So now that he had to take that plea deal, what happened then? I'm sure that changed the whole landscape.
Speaker 2:It changed his whole life. I mean, he was still working the part-time job, but all his activities stopped because when I went to the Special Olympics and Special Recreation Organization, they had told me that this is not anything they haven't seen before. You know, these kids getting caught up in the system, but their attorneys would not allow him to participate in it anymore because it was a liability. So all that stopped All his social activities, all his Special Olympics.
Speaker 1:That's pretty sad to hear.
Speaker 2:He lost his job soon after. They said he didn't pick up some cigarettes in the parking lot, which seemed really crazy, but I have a feeling they found out about it. So he lost job too and basically he also had to move out of our home. So we had to spend money and buy a condo and because he can't live on his own, my husband moved out with him. So then I stayed in my house and my husband and my son for those two years he was on probation they also put an ankle bracelet on him. They stayed in the condo, which was close to the home, but it still separated our family. So it broke up the family. It caused us a lot of financial harm because you know court system, going through the courts, paying for your attorneys and such we had to use a lot of money that was supposed to go for my son's future care.
Speaker 1:Sure, I mean, that sounds really tough. So what happened next?
Speaker 2:Then we ended up selling the house after about five years and I moved into the condo with my two dogs. It was a one-bedroom condo and we just moved in and that was the price we had to pay, because that condo was not near any schools or daycares or anything like that. It was more of a senior area.
Speaker 1:After this I think you got more intense in advocacy, correct?
Speaker 2:I continued to fight. In 2015 with another parent from Virginia, brian Calmore. We started decriminalizing well, it was LRID then, but we started advocating and started our organization because we found out there are a lot of us. There's a lot of us out there and it's still happening. We founded our organization. That kept me busy and I just kept working on. We did a post-conviction petition for my son to see if we could get that back in court. That was denied and then I just started working on a pardon.
Speaker 1:So how did you move forward with that?
Speaker 2:On my own, without an attorney, because we really were, you know, strapped for cash then. Because we really were strapped for cash, then we had to pay for the initial attorneys and then we had two more attorneys for the post-conviction petition and they happened to be two retired judges from that courthouse and they still couldn't win the case. So I worked on a pardon on my own. It took me 10 years. How did that go? Working by yourself. I did get my son a pardon and an expungement, but I will tell you that the damage is done.
Speaker 2:My son is not the same young man he was before all this happened. He was social and you know, he was working a job. He was working a job, he was contributing to society. He sat home for 10 years. Physically, you know, he gained weight and he wasn't moving around. So that took a toll on him physically. Mentally, he doesn't trust anybody anymore. He doesn't trust anybody. He has frequent meltdowns now. He's just not sociable like he used to be. So it's taken a toll on him. He's just I don't know if he'll ever be the same person he was before.
Speaker 1:Yeah, and not only that, but if it's taken a toll on him, it's taken on the family as well.
Speaker 2:Absolutely, absolutely. I will tell you that mentally I suffered and my husband suffered too Greatly. You know it was difficult. There was many, many, many nights of no sleeping and anxiety attacks and just, you know, just breakdowns because you don't think that something like this could ever, ever happen and you fight for your life to try and win. And thank goodness he didn't have to go to prison, because the horror stories that we hear about these individuals with autism in the prisons is unbelievably sad.
Speaker 1:Yes, I've spoke with several people that their sons or daughters have ended up in the prison system, and it's not a pretty sight at all.
Speaker 2:No no.
Speaker 1:With everything that you've been through. Now you're looking back at it. Is there anything that you see that now you might have done a little differently? That might have changed the outcome?
Speaker 2:Well, now that I've learned what I've learned through our organization over the years, you know there are psychologists out there that are trained to evaluate. We did have an evaluation. My attorneys weren't. They really didn't want to use it. I needed someone trained to present to the courts and that are trained in autism and how autism works and developmental disabilities as a whole. So I would have gotten, I would have definitely found someone who was trained and I probably I did get myself out there and I did, you know, make sure my story was out there and that I probably there was some press that wanted to come in the courtroom and my attorney said, no, that wouldn't be a good idea. I probably would have had him in there. I just think my attorney should have been educated more and if I could have, you know, done something to educate the court, I would have done that also.
Speaker 1:So how do we get them educated? They go to work every day. They do what they do. Like you said, they're out there to win, but sometimes compassion has to come into the picture. They have to have a little empathy towards the people they're prosecuting, and it's not like the majority of autistic people are out there just trying to figure out how they can be bad. Sometimes they're the victims. So how do we get that across to them so that they can better understand? And then, with all of this together, it's a win-win for everyone.
Speaker 2:Yes, and right now they changed the stats where it's one in 31 children born now. So they really, really have to do something. I think that and they've done it in some places they need special courts where, say, maybe there's five judges who are willing to be trained and five defense attorneys and prosecutors that are willing to do that, and you know they can combine it with mental health courts because they do have that. But you know it's not something that is curable. So they have to learn the anatomy of the brain and how all this plays into effect. But if they were to do that, if they were to just get a court where any judge willing to educate themselves, yes, I agree that would help tremendously.
Speaker 1:It totally amazes me. My podcast this month and next month is having 61 straight episodes about autism, mental health and the legal system. My first guest this month was a judge in Las Vegas. She runs a court system that diverts the kids out of the legal system as much as possible. It's the only one in the country that does this. It just shocks me that if she can do it, no one else is trying to do it either. It didn't start out that way, but it just turned into one then another. Now she's the only court system in Las Vegas and the country that does this type of legal system for autistic children. My issue is if she can do it, others around the country should be looking and saying why can't we do something like this?
Speaker 2:Oh, absolutely, absolutely. And these diversion laws are really important. I mean, virginia has it and Maryland's trying to get it, and if that bill were to spread through all the states? You know, to divert these kids, these young adults, before they even get in the court system would save a lot of grief and money.
Speaker 1:Millions.
Speaker 2:Oh yeah, so divert them right there in the beginning.
Speaker 1:Yes, absolutely. I have a judge coming on the latter part of this month. He started a 218,000 square foot facility. It covers a lot of mental health issues, along with health, dental and many other things he found by diverting them to this. As a rule, you don't see them the second time. It also saves the taxpayers hundreds and hundreds of thousands of dollars.
Speaker 2:Yes, and you know money talks.
Speaker 1:Yeah.
Speaker 2:So that would be important. If it's too bad, maybe they couldn't get out there and promote it more.
Speaker 1:Yeah, unfortunately, we're in a situation where this country and the judicial system for autistic people has lost control. It's sad we have not been able to make things better, but here we are 2025. Another sad thing I heard the other day that the country's biggest healthcare facility is the LA County Prison, and that shouldn't be prison, and that shouldn't be.
Speaker 2:No, no, yeah, they're using the prisons just to house people.
Speaker 1:So true. So if you would tell us a little bit more about what you do with your charity, in trying to bring this to the attention to the people that need to hear about it.
Speaker 2:Well, we can do some legislative work. As a nonprofit, we can't do a lot. Our main focus is advocating and giving these families resources so that maybe they can get their child out of the system. So we work with psychologists and attorneys that are willing to educate themselves. I would love to get the word out there more if we were. We don't have a lot of funds right now. I mean, we're just becoming a nonprofit. That would be huge where we could really get the word out and start, you know, moving across the country a little bit better if we had the funds for that, because it's really the public that we have to. We have to show them that.
Speaker 2:You know it's not stranger danger For me. It was someone I trusted next door, you know, and that is typically always the case. You know these kids get manipulated and they're so trusting and they will trust anybody. So I think that getting the public to understand that they shouldn't be afraid of some you know boogeyman coming, that it could be teachers and coaches, and you know people they know. So you know what they've tried to tell the public. And I have to admit, when my children were younger and I wasn't in this situation. You know it's a scary thought. You watch over your children but they're showing now that you know all these registries with restrictions on residents and things you can and can't do, and they don't work, especially for the autistic person, because you know it just ruins their life totally.
Speaker 1:Yeah, unfortunately it is just so out of control. It's kind of like when a kid does something bad, you don't say anything. 30 days later you start to reprimand him for what he did. He doesn't understand it. He's really confused about it. So to put that into our court system, we've let it get so far out of control that now you can't go back and slap them on the wrist because it's just out of control. Somehow we have to get the judges, the lawyers, the DAs. We have to get them educated about autism so that way they can look at it different and then show a little compassion and empathy towards the victims get reelected and so it's the public that they listen to and that's why I say it.
Speaker 2:You know the public has to start changing their mind and there are some people that have come out. The lady, the Wetterling lady, who started the registry way back or proposed the registry way back, has changed her mind on this. She's become outspoken about it but nobody's listening. Really that's the problem. And with our organization, when we try and go to the legislatures and that and you talk about, you know, the sex word, you know they shut that down right away. So we try to really concentrate on, you know, the individual, the autism and why they're different and why you know they can be manipulated and why a lot of this is just a behavior, a manifestation of their disability, and there's no criminal intent involved. Wow.
Speaker 1:Exactly, I hear that comment so much.
Speaker 2:That was pretty much. You know, when I went for my pardon I made sure that I had police chiefs and, like this retired state's attorney and everything, write letters to say that and that is, I think, how I managed to get my pardon, because the prison review board was really open to their letters of support. You know, as far as the public goes, yeah, I think that's a huge issue.
Speaker 1:The public just does not understand. I started this podcast less than two years ago and up until that point I knew absolutely nothing about autism. Now that I've learned more and understand it more, I look at things completely different than I used to. There's enough information coming out now so that if people would actually dig into it a little bit, they would find that autism is not the perception that they once thought it was.
Speaker 2:Right, exactly, exactly. Yeah, it's a constant push and a lot of other organizations they do help. They do a lot to help, but getting into the criminal system, that's a hard subject. It's a hard subject and that's why our organization, we get into it. I mean we're in the mud with it and try and help these people the best we can.
Speaker 1:Yeah, that's a great thing that you're doing.
Speaker 2:So what would you like to tell the listeners that you think it's very important that they need to know about what you're doing? I would say that educating yourself on the differences in the brain that's so important to learn, because it's totally different how the social aspect of individuals that are developmentally disabled, how they function and you know how their behaviors are different from someone neurotypical. And I would say you really, really have to go and educate yourself because, once again, when they get caught in the system, it's a manifestation of these disabilities. It is not any intent that's meant to harm anyone or, you know, commit a crime, and that's so unfortunate because we have to stop that.
Speaker 1:Yeah, I absolutely agree. Well, this has been great Good conversation, good information. I really appreciate you taking the time to come on.
Speaker 2:No, no problem, Anytime.
Speaker 1:Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you, enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere. Tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.