A civil rights lawyer and autism mom talks about the importance of advocacy, work-life balance and the potentially groundbreaking lawsuit in which she’s representing the parents of an autistic child.
Nationally recognized autism advocate and civil rights attorney Areva Martin is also mom to Marty, who has autism. Here, she gives advice on how to become an advocate and why it’s still important, raising an autistic child, and why we should all be concerned about a lawsuit that has captured national media attention because it declares an autistic child a nuisance.
How did you get involved in the autism community?
When my son, Marty, was diagnosed with autism at age two, I was a busy mom of two with a demanding law practice and a full range of activities in my community and church. I had no idea how I was going to handle a life-long commitment to protect and advocate for a child with special needs. It didn’t take long to see parents with fewer resources than I had were managing this disorder and its life-altering effects—and many were single parents, some holding down two minimum wage jobs or raising multiple children with special needs. I became poignantly aware of the problems parents face when trying to obtain services and even basic human rights for their special needs child.
Is that why you started your nonprofit, Special Needs Network?
Yes, meeting these brave parents inspired me to marshal my skills as an attorney to create a community safety net. Thousands of children with autism in underserved communities of color fall between the cracks. These children are often diagnosed later than their non-minority peers; misdiagnosed at a higher rate than their mainstream counterparts; labeled emotionally disturbed; and are often over-medicated. Many are denied insurance benefits and medical care and treatment. They are denied their fundamental right to an education and a future. This discrimination compelled me to start Special Needs Network to promote social justice, equality and dignity for children with disabilities. Special Needs Network gives thousands of parents and caregivers of children with autism in South Los Angeles and the state of California a voice.
Elevating the notion that there was and is an underserved community for children who experience autism is one of my greatest accomplishments. I help give a voice to those families who don’t have resources, and I’m so proud to be able to do that.
Why is advocacy for autism still so important?
Autism affects one in 64 children, yet the general public still has many misconceptions and unanswered questions as to what it looks like, what the real face of autism is. People outside the autism community are baffled by and don’t understand it. There is a continuing need to educate and raise awareness. People with autism are not dangerous. Kids on the autism spectrum can make tremendous strides. Our job in the autism community is to continue to bring awareness and understanding.
What are some actions you’ve taken that have been most helpful to your son’s growth?
Not allowing myself to be isolated, but instead seeking out families who have also gone through this experience. Connecting with other families gave me great insight into things including the best therapists and programs in our community. It created a social network for us, as well as socializing opportunities for my son. There’s a lot of fear as a parent, because you’re concerned about being ostracized. But I’ve found it’s better to be upfront and open about your child and use that chance to educate people. Parents can be everyday advocates. You don’t have to join a group or be public a spokesman to be an advocate. I wrote about those opportunities in my book, The Everyday Advocate: How to Stand up for Your Child with Autism and Other Special Needs.
As a busy lawyer and advocate, what advice would you share to help balance raising a child with autism and working outside the home?
Parents should not feel as if they have to make a choice between a career and caring for their autistic child. You can do both. Studies show parents who are happiest are those who are fulfilled in their careers. If you have the ability to work and earn income, please know you’re helping rather than hurting your child. You are creating resources that give them an opportunity for increased activities and programs.
For me, work-life balance includes a nonnegotiable health and fitness component. I had a love-hate relationship with exercise and was a yo-yo-er, working out hardcore in preparation for events. When my schedule got hectic, I would drop my exercise routine, putting everything else first. I hadn’t made exercise a lifestyle choice, hadn’t made it a priority. When I friend asked me to start a walking regimen, I put her off, thinking I would get in shape so I would be able to keep up. But on that day, I started looking at it differently. I made a commitment to walk four days a week. I scheduled it on my calendar, first thing in the morning, to make it consistent.
I stayed at it. Walking turned into running; now I run five times a week. For the first time, I feel like I’m in a good place with health and wellness. That commitment to myself, to what is now usually 60 minutes of exercise, five times a week, has changed my life. It has become my quiet time, my reflection time, my meditation time to nurture my body and mind. Parent of children with autism, in particular, make it a priority to put their child first. But self-care is a part of being a good advocate. I strongly encourage parents to make regular exercise a part of your routine. Make it as important as your child’s IEP or therapy sessions. You will see a change in how you approach the world, the stress and rigors that come along with raising a child with autism.
What has changed since your own child was diagnosed?
There remains a lack of awareness, despite the fact that the incidence of autism has continued to grow. When my child was diagnosed, that number was one in 160; today, some reports say kids are undercounted and its actually one in 45, so the number of kids who have the diagnosis has risen substantially. These days, we all know someone with a child impacted with autism. There have been many positive changes: more and more families are getting connected with services and a national movement recently resulted in a national insurance mandate.
However, there is a lack of opportunity for the growing population of young people with autism who are aging out of the system. They continue to need intensive services, but there is not a lot available to them in terms of housing, job training, jobs, social events and other opportunities to be involved in the community.
You have a big following and are very active on social media. How do you use that to advocate and bring attention to autism-related causes, including this lawsuit?
I often go to social media to galvanize support, and use it for Special Needs Network to get attention from policymakers or connect families. With social media, it’s possible to take a local niche issue and turn it into a national issue very quickly. Embrace it in some way on your terms – write a blog, get a Facebook, Twitter or Instagram account. Use them to connect with others in the autism community and be informed. It can give you a powerful voice.
Many of our readers know you from your regularly appearances in the media on television programs like The Doctors, Dr. Phil, Dr. Drew and Anderson Cooper 360 where you are frequently discussing breaking and trending news. How did you become a nationally recognized media expert and commentator?
Five years ago, I represented a family in a case that was in the national spotlight because an educator was prosecuted criminally for child abuse. The victims were primarily non-verbal autistic kids. My clients and I were invited to the Dr. Phil Show to discuss this the case and for Dr. Phil to give the parents some advice on how to deal with the trauma they experienced after learning of the abuse. Once on the show, I developed a relationship with the producers and as they say in Hollywood—“the rest is history.” On a serious note, speaking up for those families before millions and watching their reactions made it clear to me that I could use my Harvard law degree not just in the courtroom representing families, but I could also speak to millions on a wide range of issues that impact the autism community, underserved populations, children and families.
I now work with various networks regularly as a go-to expert and commentator on autism and civil rights issues as well as trending and breaking news. I use my appearances to advocate on behalf of women and children, particularly kids with autism. Lately my commentary has focused on setting the record straight that people with autism are not dangerous, that they are more likely to be the subject than the perpetrators of violence. It’s a platform to give a voice to stories that are important to our autism community.
You and your Los Angeles-based firm, Martin & Martin LLP, are representing the California parents in the recent lawsuit in which neighbors are asking the courts to name an autistic child a public nuisance. How did you get involved with this lawsuit?
The family was encouraged to seek me out because of my advocacy work. As the mother of an autistic son, I’m a member of the autism community and have represented families in other civil rights cases. Though not filed as a civil rights case, this lawsuit against a family of an autistic child raises serious civil rights issues.
How did this situation between neighbors end up as a lawsuit?
Two sets of neighbors, Marci and Robert Flowers and Bindu Pothen and Kumaran Santhanam filed a lawsuit in Santa Clara County Superior Court seeking monetary damages and a temporary and permanent injunction against my clients, Vityut Gopal and Parul Agrawal, and their now 11-year-old son, who is on the spectrum. Some of the allegations date back to when my client (the little boy) was three years old and involve hair pulling and entering a garage and opening a bag of fertilizer. In the lawsuit and media interviews and posts, the plaintiffs claim that my client “terrorized” the neighborhood and presented a threat to them. They even claimed that his presence and conduct in the neighborhood diminished their property values. They believed their only recourse was to file a lawsuit and have the court declare him a public nuisance.
Why is a lawsuit like this so important to the autism community? What implications might it have?
This case is challenging where families with autism can live. In some ways, it’s no different than the barrage of lawsuits filed in the 1960s against African Americans and other minorities as they sought to move out of urban areas of major cities and into all White communities. They were often met with racial hostility, burning crosses and expensive lawsuits, all aimed at denying them fundamental rights guaranteed under the U.S. Constitution.
This and lawsuits like these invoke those same negative feelings, stigmatize kids with autism as being dangerous and create the possibility that kids with autism or another disability will be forced into isolation. It could set the strides and progress the autism community has made back decades in terms of community and school inclusion. Ultimately, one must ask, if this family can’t live in this neighborhood—where can they live?
What do parents need to know and how could they respond as members of the autism community?
This case illustrates why autism parents need to be involved in raising awareness and educating families where they live–neighbors, homeowners associations, community and political leaders and law enforcement agencies. This is why getting involved with nonprofit advocacy programs is so important. You cannot assume people in your community understand what autism looks like.
Personally, as a mom of a child with autism, I’m outraged by this case because I know how difficult and challenging it is to provide the best care for someone on the autism spectrum, to make medical appointments and secure needed services. To fight a lawsuit is an added burden of cost, time and resources, and emotionally draining. Add to that the already lengthy list that parents of autistic children have to manage. These parents are brave and courageous to speak up about something so personal. It has to be devastating to be asked that your child be declared a public nuisance.
What advice do you have? Have you ever dealt with a situation like this?
Yes. Autism families who are renters experience a great deal of harassment and discrimination. I’ve worked with and defended families who have had child protection services called on them because their autistic child yelled or made noise or they have been threatened by landlords with eviction. It’s much less common with homeowners. It’s important for families to know their rights, to know that there are federal anti-discrimination housing and other civil rights laws that protect them and their rights to live freely in the neighborhoods of their choice.
This case is shocking and has captured national media attention because it seeks to declare a young child with a neurological disorder a public nuisance. Think about the context in which we typically use the term “public nuisance” – it’s a term normally reserved for waste sites or other harmful, non-human entities. These are things that disrupt, diminish or bring harm to a person or property value. This lawsuit is asking that a child who is disabled be characterized like a toxic waste site!
Is discriminating against autism families becoming more common?
As the autism population continues to grow, issues about discrimination will grow, and people in the community will need to be aware of the law and be prepared for challenges. In another recent legal case, an autistic child was kicked off an airplane because he was making noise. In one of the mass shootings we’ve recently experienced across the nation, it was determined that the perpetrator was on the autism spectrum. These are quiet, underlying messages that individuals with autism are dangerous or uncontrollable. I can’t help but imagine these messages, as subtle as they are, will start to have an impact. When we hear families like the ones in this lawsuit talk about a young boy terrorizing the neighborhood, it’s damaging to the progress we’ve made within the autism community. The fact that a kid – a child who goes to school, to restaurants and events, on planes, places throughout his community – can be thought of in that way should be of great concern to the autism community.
I am humbled to have been selected to fight for the Gopal family and to stand up to bigotry against kids on the spectrum. I am also grateful to the thousands of families and advocates across the country who have shown their support to the family by blogging about the case, contributing to their Go Fund Me account, or sending words of encouragement. As I fight the legal battle for my clients, I urge advocates around the country to continue to show their support. As a community we must, and we can, end harassment and discrimination against kids on the spectrum and their families.
Mary Sue Lawrence is a freelance writer based in Charleston, SC. She enjoys the outdoors, traveling and spending time with her husband and 5-year-old son.
This article was featured in Issue 42 – Autism: Fighting the Stigmas