Areva Martin: How One Mother Became an Everyday Autism Advocate

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.
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 Handcuffs the Silent Crisis special event. Today, we're
joined by Reva 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, 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 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.
On my inner.
Circle had ever had or 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.
How old is your son now?
He's a young adult. Now he is twenty five.
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.
Well, I definitely have seeing 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 or 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 that 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 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,
you know, literally thousands and thousands of responses. So it
was 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 ate drank hot water with women
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, drinking hot ye 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 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.
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 on 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.
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 Land and Bob Cagel 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 spent time with
Lenn Cagel.
From what I understand, you've also written a book that
delves into this journey and as many facets.
Is that correct?
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 five thousand articles. I've done that research
for you, and I only use those trusted researchers and
sciences 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.
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
spectrum as well?
Oh?
Absolutely, I've used by 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 IPS 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 want 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 thirty 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?
Or 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 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 of a 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 new one 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?
Yes, absolutely, there have been some high profile cases like that,
and 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. 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 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.
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 you know, 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, substance
abuse courts and system so that anybody that does have
substance abuse is looking at a different form of you know,
they have a different experience in 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 neurodivergent people. Is 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 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 office and 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
meaning full 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,
our 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, healthcare, a
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't bring awareness even to their elected officials.
I talked to folks that 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.
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 kiln away from the legal system.
I'm truly puzzlistic 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.
Well, you've got to amplify that story in her results, right,
that's it 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 twenty four to seven
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, 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 Shepherd's daytime syndicated talk show the week of April seventh.
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 bad pieces, I use
my voice in as many places as I can. I'm
frequently testifying before legislative bodies. And then my nonprofit we
use again our platform to through our website, through against
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. 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 or divergent kids or families who 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?
Crow?
We are in our seventeenth 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
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. 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 services of 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 congressman,
congress people, i should say, as well as senators, governors.
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 that is to get a bill through the House
or through the Senate. I have a couple of former
House of Representatives coming on my podcasts 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, 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.
Elected officiers 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 officiers. You show up at
their town hall meetings, you show up at rallies, you
make appointments to go in to speak with their aide
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 the fishers 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. 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 non projects 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 or people in general so they
know the direction to take.
We host so conference every year.
This year will be April twenty sixth, and at that
conference we provide training to advocates.
We doing a.
Class called Parent Advocacy Mentoring. We do it about two
or three times a year. Used to be in personel
a lot of us on zoom where we teach parents
and advocates how to do exactly that.
I'm curious if you also assist with fundraising ideas, as
that's one of the 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 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 maybe present with some kind of you know,
visible disability. Autism impacts one in thirty four one in
thirty six people, so you're gonna be hard pressed to
find someone whose life has not been touched by autism.
So I don't think people should be deterred by any
what i'll call antique 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.
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, 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.
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 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.
Web two.
One is our what we call Tuesday Transformation Conference is
going to be April twenty six at al Femino 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.
Eighteenth, 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 wildfire.
That's a ticketed fundraising event on Sunday, May eighteen.
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.
Oh it's been my pleasure. Thanks again.
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