Tony Mantor: Why Not Me ? - Areva Martin: How One Mother Became an Everyday Autism Advocate

Episode Date: April 25, 2025

Send us a text 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 syste...mic 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 Visit tonymantor.com/contact if you'd like to share your story on the podcast.   https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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Starting point is 00:00:05 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 your 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. Welcome to Why Not Me the World, Humanity Over Hank Us, the Silent Crisis Special Event.
Starting point is 00:00:58 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. Arriva 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
Starting point is 00:01:27 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. Oh, thank you. Thanks for the invitation. Oh, it's my pleasure.
Starting point is 00:01:42 With all the different things that you've accomplished, what led you to advocating for autism and special needs? 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,
Starting point is 00:02:21 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. How old is your son now? He's a young adult now. He is 25.
Starting point is 00:02:47 So along this journey, how is 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? Well, I definitely have saying 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 for into
Starting point is 00:03:36 nonprofits and community-based organizations. I've seen more funding. 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. What were some of the initial challenges you encountered? How did you tackle them and eventually overcome them? Challenges of information. There was so much information, but yet it wasn't
Starting point is 00:04:20 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. So it was a a time where people were trying to find their way. And so every day someone would send me a story, 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 kids. 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, if drinking hot water with lemon was going to be the answer. Of course, you wanted to do that. But
Starting point is 00:05:04 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?
Starting point is 00:05:38 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 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 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? 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
Starting point is 00:06:21 experts. I researched. And I just approached 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 who led in 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. From what I understand, you've also written a book that deles into this journey and its many facets. Is that correct? I did. I wrote a book
Starting point is 00:07:05 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. I've done that research for you. And I only used those trusted researchers and sciences and, you know, provided that information. Here's, 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, with all those powerful tools
Starting point is 00:07:50 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. 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 a conflict with their school district.
Starting point is 00:08:26 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 and state court and administrative hearings to testify before legislative bodies to help write and shape legislation at the state and national level. 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? Well, be more specific when you say legal challenges.
Starting point is 00:09:19 Do you mean individuals on the spectrum having their legal rights violated? what do you mean? Because that's kind of a broad state. 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
Starting point is 00:09:39 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
Starting point is 00:10:00 autism, leaving their children to flounder helplessly through an intimidating, relentless, and unforgiving process. Have you come across anything like this in your journeys? Yes, absolutely. There have been some high-profile cases like that, and, you know, everyday people who have experienced that, yes, we are lagging in terms of our information about autism. and about how autism impacts individual's behavior and how that behavior is then treated by the criminal justice system.
Starting point is 00:10:30 Absolutely, I've experienced that. And have worked with families who have had their children either 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. What are your thoughts on navigating a... a situation where legal issues arise, especially regarding how we can improve the perception
Starting point is 00:10:59 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? 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.
Starting point is 00:11:32 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 need a drug rehabilitation. So a lot of district attorneys and courts around this country have set up those kind of, you know,
Starting point is 00:11:57 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 a criminal justice system. And likewise, that's been very effective. I know people have 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 neurodivis. 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. How can we effectively expand
Starting point is 00:12:33 awareness and understanding of autism, especially regarding legal challenges? There was an incident where an autistic young man was nearly arrested in a part due to an officer mistaking his behavior for drug use. So how do we get the information and information? education out there so that we can drive systematic change, influence national policies, and create a meaningful impact across the country. 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
Starting point is 00:13:20 police budgets than they did on social services. They spend more money on police than they did, you know, health care and health resources. So it's a bottom-up approach. 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,
Starting point is 00:14:03 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. 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 diverse 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,
Starting point is 00:14:40 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? 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.
Starting point is 00:15:08 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. 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.
Starting point is 00:15:33 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 Sherry Shepard'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.
Starting point is 00:16:05 I use my social media accounts. I use bad pieces. I use my voice in as many places as I can. I'm frequently testifying the full legislative bodies. And then my nonprofit, we use, again, our platform to, through our website, through, again, social media and outreach community, boots on the ground outreach efforts to raise awareness. I'm glad you brought that up. I'd love to dive into your foundation.
Starting point is 00:16:34 What's it called and can you expand on what you do to help people within your communities? 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, rural divergent kids, their families. We provide direct services as well as legislative advocacy. How long has it been established in actively making an impact, and how have you seen it grow? We are in our 17th year, and we have six offices across the state of California, and we serve tens of thousands of families each year. So having the platform you have, you likely have countless
Starting point is 00:17:13 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? 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 and they may not have robust services. We're in California. States like Massachusetts, 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
Starting point is 00:17:55 where you physically live can dictate what the quality and quantity of services available to you. 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? Oh, absolutely. We've been, 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.
Starting point is 00:18:48 So my advocacy definitely extends past the state of California. 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
Starting point is 00:19:32 to help get this pass to help the people that need it? 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
Starting point is 00:20:14 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. 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.
Starting point is 00:21:01 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? 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. That's really good to hear. Now, are there other things that you do as well to help these activists
Starting point is 00:21:28 or people in general so they know the direction to take? We host a conference every year. This year will be April 21, 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. Used to be in person. Now, a lot of us on Zoom, where we teach parents and advocates how to do exactly that.
Starting point is 00:21:54 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?
Starting point is 00:22:30 Well, I definitely have provided a lot of a situation. 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. Autism impacts 1 in 34, 1 in 36 people. 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.
Starting point is 00:23:15 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 a, 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. Yes, I do. 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? 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.
Starting point is 00:24:12 They're looking for connections, both for themselves as parents, as well as for their child, teen, or young adult on the spectrum. 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. 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,
Starting point is 00:24:49 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. Absolutely. Do you have any events coming up in the future? We have two. One is our, we'll call Tuesday Transformation Conference. It's going to be April 26th at Elthamino 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, or 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 in Los Angeles wildfires.
Starting point is 00:26:00 That's a ticketed fundraising event on Sunday, May 18th. 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.
Starting point is 00:26:17 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, send them to tonymentor.com, contact, then they can give us their information
Starting point is 00:26:46 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.

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