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
Areva Martin: How One Mother Became an Everyday Autism Advocate
CNN contributor and civil rights attorney Areva Martin shares her personal journey of raising an autistic son while becoming a powerful advocate for disability rights and creating systemic change.
• Son Marty's autism diagnosis at age two prompted an intensive learning journey
• Navigated overwhelming and often inaccurate information by applying legal training to seek evidence-based resources
• Witnessed evolution from stigma and "cure" focus to greater acceptance and integration of neurodivergent individuals
• Founded Special Needs Network, California's largest social justice organization for special needs children
• Advocates for reform in criminal justice system to better serve autistic individuals
• Uses multiple platforms including social media, television appearances, and legislative testimony to raise awareness
• Emphasizes grassroots advocacy to influence elected officials and policy decisions
• Trains parents and organizations in effective advocacy strategies
• Hosting annual Tools for Transformation Conference on April 26th in Torrance, California
• Pink Pump Fundraising Gala on May 18th to support summer camp and wildfire victims
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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 Mantor.
Speaker 1:Welcome to why Not Me? The World Humanity Over Handcuffs the Silent Crisis special event. Today, we're joined by Areva Martin, a passionate, outspoken and insightful leader who's making a significant impact in media. She's a CNN contributor, an award-winning civil rights attorney, a civic leader and a television host. Areva is also a prolific writer and best-selling author, with notable books like the Everyday Advocate, standing Up for your Child with Autism and Make it Rain. She's here to share her personal story about raising her autistic son, as well as details about her foundation and upcoming speaking events. With a wealth of knowledge and experience, we're truly honored to have her here with us. Thanks for joining us.
Speaker 2:Oh, thank you. Thanks for the invitation.
Speaker 1:Oh, it's my pleasure With all the different things that you've accomplished. What led you to advocating for autism and special needs?
Speaker 2:My son, Marty. He was diagnosed with autism when he was two and it was really a devastating diagnosis for us. I didn't know much about autism. No one in my inner circle had ever had, or at least shared with me that they had a child on the spectrum. So as I was trying to get information to help Marty, I kept running into a lot of brick walls. I kept running into folks who had more questions than they had answers, and it was very frustrating for me. It became clear to me that there was not going to be anyone that would save me, that I had to become the answer to my own questions. And that led me on a journey to learn as much as I could about the diagnosis, the treatment, the services, to learn what the federal and state law had to say about children with special needs, to learn what legislation was out there, what funding was out there. So it just made me become an expert.
Speaker 1:How old is your son now?
Speaker 2:He's a young adult. Now he is 25.
Speaker 1:So, along this journey, how has your approach evolved as you've navigated the unknown, learned and grown over the years? What significant shifts have you observed in your perspective, methods or growth, along with working with others, compared to where you first started?
Speaker 2:Well, I definitely have seen the industry evolve. I've seen people be a lot more open and honest and transparent. Less stigma, less secrecy, less negative association with individuals on the spectrum, more acceptance. I've seen self-advocates get heavily involved to speak up for what's important to them, so it's not just parents speaking on their behalf. I've seen more funding pour into nonprofits and community-based organizations. I've seen more research not so much around cure, because when I started my journey, all the focus was on how do we cure this. Now the focus is much more on how do we integrate individuals on the spectrum into our community. How do we make them feel loved and welcomed? How do we adjust our movie theaters, our workplaces and other community public spaces to accommodate people who are neurodivergent. So I've seen the language change. I've seen the symbolism change. There have been massive changes.
Speaker 1:What were some of the initial challenges you encountered? How did you tackle them and eventually overcome them?
Speaker 2:Challenges of information. There was so much information, but yet it wasn't really well organized. A lot of it wasn't accurate. There was a lot of disinformation. So one of the challenges was just weeding through all the information. You could do a Google search on Google. You would do a search on Google and you'd get literally thousands and thousands of responses.
Speaker 2:So it was a time where people were trying to find their way, and so every day, someone would send me a story.
Speaker 2:Oh, did you see this story about a woman whose son had autism and they drank hot water with lemon for five days and they cured their kid. So it was all of these, you know, wives tales, urban tales about cures, and that was very confusing because, as a good parent, of course drinking hot water with lemon was going to be the answer. Of course you wanted to do that, but I quickly learned that it's a neurological condition and if you have a stroke, drinking hot water with lemon might make you feel good, but it's not going to cure you from the paralysis that you may experience as a result of a stroke. So I had to accept that people were like me, on their own journeys. They were looking for answers, they were trying to be helpful, but that autism is a spectrum disorder and there's no one-size-fits-all approach to it. And I just had to say to my friends very politely thank you for that story. I'm going to take a look at it and keep moving right.
Speaker 1:So, with all those challenges, plus with the input that was coming to you, what was the next thing you did and how did you address it?
Speaker 2:from that point on, so I overcame it by applying a lot of what I do as a lawyer using logic, using evidence, using science. I'm a data-driven person. You're in the law. You're taught to rely on evidence, not anecdotal stories. So I had to take the same approach. What's the evidence? What's the science? What do we know for sure to be the case? Who are the leading experts in the field?
Speaker 2:I went and spent a summer with one of those leading experts in Santa Barbara, at the University of California, Santa Barbara. I went and spent time with experts, I researched and I just approached it the way I would any medical condition. If I had a diagnosis of cancer or heart condition, how would you approach it? You know you wouldn't take cures off the internet. You would go find the best scientists, the best physicians, the best surgeons. And so I had to take that same approach with my sons. The experts, Glenn and Bob Cagle, were renowned experts at the time. They still are. They've written the books. They had been leading researchers in the field, and I went and spent a summer, drove to Santa Barbara once a week to spend time with Glenn Cagle.
Speaker 1:From what I understand, you've also written a book that delves into this journey and its many facets. Is that correct?
Speaker 2:I did. I wrote a book called the Everyday Advocate, and my book is really a practical guide. It took everything I'd learned as a parent, plus my knowledge as a civil rights lawyer, and it was walking parents through the journey, letting them know if you're looking for a trusted source of information, here it is. You don't have to Google and dig through 5,000 articles. Here it is. You don't have to Google and dig through 5,000 articles. I've done that research for you and I only use those trusted researchers and scientists and provided that information. Here's what the leading researchers are saying about autism. Here's what you should know. Now, whether you decide to follow something else, that's okay too, but at least I wanted folks to have access to that kind of information. Sure, I think that's great. Now, whether you decide to follow something else, that's okay too, but at least I wanted folks to have access to that kind of information.
Speaker 1:Sure, I think that's great. Now, with all those powerful tools and resources right at your fingertips, have you found ways to harness them to advocate for your autistic child and extend that support to others across the spectrum as well?
Speaker 2:Oh, absolutely. Spectrum as well oh, absolutely. I've used my lawyer skills to negotiate IEPs, not only for my son, but I actually started a disability rights practice in my law firm several years after my son's diagnosis and I went to IEPs with hundreds of different families. I advocated for families in their school meetings. I filed lawsuits on behalf of families who were in conflict with their school districts. I filed federal civil rights disability lawsuits against kids, against school districts where there had been discrimination or even physical injury that kids suffered in classrooms. So, absolutely, I've used my legal background to one represent families in federal court, in state court, in administrative hearings, to testify before legislative bodies to help write and shape legislation at the state and national level.
Speaker 1:I'm hosting a special this month featuring 30 straight episodes on autism and the legal system. It features CIT trainers, judges, former legislators. Of course, this episode it's a silent crisis. Many do not realize the immense legal challenges faced by autistic individuals. Have you encountered this at all?
Speaker 2:Well, be more specific. When you say legal challenges, do you mean individuals on the spectrum having their legal rights violated? What do you mean? Because that's kind of a broad statement.
Speaker 1:Sure. I've had in-depth discussions with numerous parents who've recounted the profoundly distressing and often traumatic experiences of their autistic children becoming entangled in the complexities of the legal system, many ending up incarcerated and enduring an excruciating and traumatic ordeal. They've expressed to me with frustration that the judges, attorneys and the entirety of the judicial system appeared utterly uninformed and ill-equipped to understand the nuances of autism, leaving their children to flounder helplessly through an intimidating, relentless and unforgiving process. Have you come across anything like this in your journeys?
Speaker 2:Yes, absolutely. There have been some high profile cases like that, and you know everyday people who have experienced that yes, arrested or families who've had kids removed from their homes because the parents have been accused of conduct that the system has deemed inappropriate or dangerous for children, when quite the contrary has been true.
Speaker 1:What are your thoughts on navigating a situation where legal issues arise? Navigating a situation where legal issues arise, especially regarding how we can improve the perception of judges and the ADA and the district attorney's office. How can we foster a better understanding that when someone with autism engages in certain behaviors, it might not stem from criminal intent, but rather from a lack of understanding or a belief that the behavior is normal? What steps do you think we can take to shift that perception?
Speaker 2:Oh, it's education and awareness. I mean that's how we change perceptions, it's narrative change right. It's helping those judges and district attorneys. In the same way, we've had a lot of awareness campaigns around mental health and we've seen changes around addiction. We now have addiction courts. We have individuals who may be involved with some kind of petty theft or so and they have a substance abuse problem. We realized locking those people up was not the answer. Those people needed drug rehabilitation. So a lot of district attorneys and courts around this country have set up those kind of substance abuse courts and systems so that anybody that does have substance abuse is looking at a different form of you know they have a different experience in the criminal justice system and likewise that's been very effective. I know people who've gone through those kinds of rehab programs and therefore have not been time in traditional jails or prisons, and we need something very similar when it comes to neurodivergent people. It's changing that narrative lots of education, lots of awareness, looking at alternative ways in our criminal justice system to deal with those individuals.
Speaker 1:How can we effectively expand awareness and understanding of autism, especially regarding legal challenges? There was an incident where an autistic young man was nearly arrested in a park due to an officer mistaking his behavior for drug use. So how do we get the information and education out there so that we can drive systematic change, influence national policies and create a meaningful impact across the country?
Speaker 2:Well, a lot of it is funding, and we know budgets, whether it's at the state level or the local level, are a statement of a community's priorities. So we changed those budgets. We saw after George Floyd's murder where many local police departments, local cities, local municipalities were looking at how they spent their money. Did they spend more money on police budgets than they did on social services? Did they spend more money on police than they did, you know, health care and health resources? So it's a bottom-up approach.
Speaker 2:We can't expect legislators to be responsive to the needs of people with autism unless they know that the people who vote for them, their constituents, want prioritized. They want to see this issue prioritized. So that's what this advocacy is about. It's about galvanizing people in their local communities so that they can bring awareness even to their elected officials. I talk to folks in elected office all the time and they had absolutely no awareness of this. So they clearly aren't going to go and advocate for a piece of legislation or for funding if they're not made aware of it. And unfortunately, it falls on the parents and oftentimes the parents are already stressed, already overworked, already overwhelmed. The reality is, those personal stories that parents tell have a tremendous impact.
Speaker 1:Yes, they certainly do. In Las Vegas, there's a judge who has a system in place that is the one of a kind. There's no other one like it in the country. This court system effectively diverts young children away from the legal system. I'm truly puzzled as to why she's the only one doing this. What can we do to expand this approach, ensuring that those who don't belong in the system are redirected, and how can we help other judges recognize the value of this method that she has put in place?
Speaker 2:Well, you've got to amplify that story and her results. Right, that seems like the perfect story to be on the nightly news or daytime news program on social media. You've got to amplify those stories. I wasn't aware of that court myself. So those stories have to be told. And look, we're dealing in a 24-7 news cycle. We're dealing with post-transition at the presidential level, so cutting through, getting those stories to cut through, are difficult, but those of us who have platforms have to use those platforms to help tell those stories.
Speaker 1:I'm really glad you brought that up, because you have a tremendous platform. What are some of the things you do? I know you've written a book, so what are some of the things you're doing to bring more awareness and help these people out?
Speaker 2:So what are some of the things you're doing to bring more awareness and help these people out? I use my social media. I have over a million followers probably close to a million and a half followers across social media. I'm constantly posting. I use a combination of traditional media. I'll be on Sherri Shepherd's Daytime Syndicated Talk Show the week of April 7th. I use local news. I'm frequently on our local news stations talking about autism, talking about the programs that my nonprofit run. I use my social media accounts. I use op-ed pieces. I use my voice in as many places as I can. I'm frequently testifying before legislative bodies and then my non-profit. We use again our platform through our website, through, again, social media and outreach community boots on the ground, outreach efforts to raise awareness.
Speaker 1:I'm glad you brought that up. I'd love to dive into your foundation. What's it called, and can you expand on what you do to help people within your communities?
Speaker 2:It's the Special Needs Network. It's the California largest social justice and disability rights organization and we work on behalf of kids who have special needs, neurodivergent kids, their families. We provide direct services as well as legislative advocacy.
Speaker 1:How long has it been established and actively making an impact, and how have you seen it grow?
Speaker 2:We are in our 17th year and we have six offices across the state of California. We serve tens of thousands of families each year.
Speaker 1:So, having the platform you have, you likely have countless people reaching out to you. What are some of the challenges you've encountered while working with them and what are some of the successes you've achieved in helping them along the way?
Speaker 2:Well, a lot of the wins come from helping families get services. So whether I'm directly involved or getting them connected to my nonprofit or getting them connected to professionals in their own community, the challenges are again sometimes, depending on the community that they live in, they may not have robust services. We're in California, states like Massachusetts. There's some states that have really robust social service agencies. There are other states that don't do as well. So the challenges are unfortunately so. Much of this is geographically based and just depending on where you physically live can dictate what the quality and quantity of service is available to you.
Speaker 1:One of the things that we lightly touched upon is, just as you recently mentioned, is the geography of things. Do you talk with, or do you have, people that are advocating for legislators to make change so that we can turn this into a national rule of law rather than just a regional one?
Speaker 2:Oh, absolutely. I have frequently been in touch with or testified before commissions in Washington as well as the state of California, so this is definitely both a statewide and national efforts. My advocacy and I am consulting federal elected officials, from congressmen, congresspeople, I should say, as well as senators, governors so my advocacy definitely extends past the state of California.
Speaker 1:That's just so good to hear. Now a lot of people do not understand or realize how difficult it is to get a bill through the House or through the Senate. I have a couple of former House of Representatives coming on my podcast later this month Tim Murphy and Patrick Kennedy. They both talk about how they got bills passed through and how difficult it was in getting that done. It's a real tough issue to get these people to get this done. So how do you tell people or inform people on what to do to put the pressure on these representatives to help get this passed, to help the people that need it?
Speaker 2:Elected officials respond to their constituents. So this has to be an issue that is where you're able to galvanize constituents, who then put pressure on their elected officials. You show up at their town hall meetings, you show up at rallies. You make appointments to go in to speak with their aides, to speak with them. You email them, you call them. They've got to know that people in their districts, the people that elect them, expect them to prioritize this as an issue. But if they don't hear from constituents, if they're only hearing about immigration issues and they're only hearing about economic issues or gun control issues, abortion rights, reproductive rights, all the various issues that elected officials have to contend with, if they're not hearing about the issue of autism, the criminal justice system, they're not going to make it a priority.
Speaker 1:Yes, that totally makes sense. I've also heard and I'm sure that you've probably helped people on this as well, I've heard that if one person goes in to see their representative, they tell them their story, then they leave. The representative says, oh, that's nice, we'll see what we can do. But when they have people that show up in groups, that continually keep it in front of them and they're consistently hearing about the issue at hand, then that will keep it on their mind more often than not and consider helping. So do you put together groups like that, or do you help put together groups like that, so they're more informed on what to do with their representatives?
Speaker 2:Yes, we've actually done training for other nonprofits. We've taught other nonprofits how to build capacity, how to develop and execute on an advocacy campaign and strategy. So we've been heavily involved in helping grassroots activists.
Speaker 1:That's really good to hear. Now, are there other things that you do as well to help these activists or people in general, so they know the direction to take?
Speaker 2:We host a conference every year. This year will be April 26th and at that conference we provide training to advocates. We do a class called Parent Advocacy Mentoring. We do it about two or three times a year. It used to be in person Now a lot of us on Zoom where we teach parents and advocates how to do exactly that.
Speaker 1:I'm curious if you also assist with fundraising ideas, as that's one of the biggest challenges I hear about from various organizations. They often struggle to raise funds because, unfortunately, conditions like autism and certain mental health issues aren't visibly apparent. People tend to donate more readily when they can see a physical disability, like with Down syndrome, compared to supporting someone who doesn't outwardly appear to have a problem but is dealing with brain function challenge. Do you offer help in this area as well?
Speaker 2:Well, I definitely have provided a lot of assistance and consulting and advice to organizations trying to do that, but I don't know if I agree that the funding is only for individuals who may be present with some kind of visible disability. So you're going to be hard pressed to find someone whose life has not been touched by autism. So I don't think people should be deterred by what I'll call antiquated notion that because autism doesn't present, you know, like someone who has a limp or someone you know who has a cane, because they're visually impaired, that they can't get the attention of elected officials, funders and others who will support them.
Speaker 1:Oh, I agree that they need support and it will not stop some from supporting them. I've just heard from organizations that it has been tougher because one person told me that he had an autistic child and another one that was autistic with Down syndrome, and the money came pouring in for the one with Down syndrome more than the autistic one. So unfortunately, that's just one challenge they face. So now I understand that you also do a lot of public speaking.
Speaker 2:Yes, I do.
Speaker 1:When you travel to different places and do your speaking. What are some of the common things that people will talk to you about after you've finished?
Speaker 2:Things I hear a lot from parents is they're in search of community, that they feel isolated, that they don't know other parents, they don't know where to go for resources in their community and that they are in search of community. They're looking for connections both for themselves as parents as well as for their child, teen or young adult on the spectrum.
Speaker 1:So what would you like to tell the listeners that you think is very important? That they need to know about what you do and what you're trying to do to help everyone you can with your foundation.
Speaker 2:People should know that people with autism have tremendous potential. They can work, they can get married, have children, they can be incredibly productive members of society, and so, as a society, we have an obligation to them, to accept them, to include them and to learn as much as we can about how they move about the world, how they learn, how they communicate. So this notion that somehow autism is a death sentence or people with autism will have a lesser quality of life. I want people to be disabused of any of those notions and to appreciate that individuals on the spectrum are incredibly giving and capable of being productive, and we can form really meaningful, productive relationships with them.
Speaker 1:Absolutely. Do you have any events coming up in the future?
Speaker 2:We have two. One is our what we call Tools to Transformation Conference. It's going to be April 26th at El Camino College in Torrance, california. That's a free two-day conference, primarily for the first day is for professionals that work in the health and human services field. The second day is all centered on parents and caregivers. Then, on May 18th, we have our annual Pink Pump Fundraising Gala, where we are raising money for a very unique summer camp that we host every year, as well as for victims that were impacted by the Altadena and Los Angeles wildfires. That's a ticketed fundraising event on Sunday, may 18th.
Speaker 1:That's awesome. I think that's a really good thing you're doing. Well, this has been great, Great conversation, great information. I really appreciate you taking the time to come on. Thank you so much. I appreciate it. It oh, it's been my pleasure. 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. If you know anyone that would like to tell us their story, we hope that 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 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.