April 25, 2025 • 27 mins
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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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to why Not Me ?
The World Podcast, hosted byTony Mantor, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:30):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismaround the world.
Hi, I'm Tony Mantor.
(00:53):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Today, we're joined by ArevaMartin, a passionate, outspoken
and insightful leader who'smaking a significant impact in
media.
She's a CNN contributor, anaward-winning civil rights
attorney, a civic leader and atelevision host.
(01:13):
Areva is also a prolific writerand best-selling author, with
notable books like the EverydayAdvocate, standing Up for your
Child with Autism and Make itRain.
She's here to share herpersonal story about raising her
autistic son, as well asdetails about her foundation and
upcoming speaking events.
With a wealth of knowledge andexperience, we're truly honored
(01:36):
to have her here with us.
Thanks for joining us.
Speaker 2 (01:39):
Oh, thank you.
Thanks for the invitation.
Speaker 1 (01:41):
Oh, it's my pleasure With all the different things
that you've accomplished.
What led you to advocating forautism and special needs?
Speaker 2 (01:50):
My son, Marty.
He was diagnosed with autismwhen he was two and it was
really a devastating diagnosisfor us.
I didn't know much about autism.
No one in my inner circle hadever had, or at least shared
with me that they had a child onthe spectrum.
So as I was trying to getinformation to help Marty, I
kept running into a lot of brickwalls.
(02:11):
I kept running into folks whohad more questions than they had
answers, and it was veryfrustrating for me.
It became clear to me thatthere was not going to be anyone
that would save me, that I hadto become the answer to my own
questions.
And that led me on a journey tolearn as much as I could about
the diagnosis, the treatment,the services, to learn what the
(02:31):
federal and state law had to sayabout children with special
needs, to learn what legislationwas out there, what funding was
out there.
So it just made me become anexpert.
Speaker 1 (02:42):
How old is your son now?
Speaker 2 (02:44):
He's a young adult.
Now he is 25.
Speaker 1 (02:47):
So, along this journey, how has your approach
evolved as you've navigated theunknown, learned and grown over
the years?
What significant shifts haveyou observed in your perspective
, methods or growth, along withworking with others, compared to
where you first started?
Speaker 2 (03:08):
Well, I definitely have seen the industry evolve.
I've seen people be a lot moreopen and honest and transparent.
Less stigma, less secrecy, lessnegative association with
individuals on the spectrum,more acceptance.
I've seen self-advocates getheavily involved to speak up for
(03:30):
what's important to them, soit's not just parents speaking
on their behalf.
I've seen more funding pourinto nonprofits and
community-based organizations.
I've seen more research not somuch around cure, because when I
started my journey, all thefocus was on how do we cure this
.
Now the focus is much more onhow do we integrate individuals
on the spectrum into ourcommunity.
(03:51):
How do we make them feel lovedand welcomed?
How do we adjust our movietheaters, our workplaces and
other community public spaces toaccommodate people who are
neurodivergent.
So I've seen the languagechange.
I've seen the symbolism change.
There have been massive changes.
Speaker 1 (04:08):
What were some of the initial challenges you
encountered?
How did you tackle them andeventually overcome them?
Speaker 2 (04:16):
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 ofdisinformation.
So one of the challenges wasjust weeding through all the
information.
You could do a Google search onGoogle.
You would do a search on Googleand you'd get literally
thousands and thousands ofresponses.
So it was a time where peoplewere trying to find their way,
(04:39):
and so every day, someone wouldsend me a story.
Oh, did you see this story abouta woman whose son had autism
and they drank hot water withlemon for five days and they
cured their kid.
So it was all of these, youknow, wives tales, urban tales
about cures, and that was veryconfusing because, as a good
parent, of course drinking hotwater with lemon was going to be
(05:02):
the answer.
Of course you wanted to do that, but I quickly learned that
it's a neurological conditionand if you have a stroke,
drinking hot water with lemonmight make you feel good, but
it's not going to cure you fromthe paralysis that you may
experience as a result of astroke.
So I had to accept that peoplewere like me, on their own
journeys.
They were looking for answers,they were trying to be helpful,
(05:31):
but that autism is a spectrumdisorder and there's no
one-size-fits-all approach to it.
And I just had to say to myfriends very politely thank you
for that story.
I'm going to take a look at itand keep moving right.
Speaker 1 (05:38):
So, with all those challenges, plus with the input
that was coming to you, what wasthe next thing you did and how
did you address it?
Speaker 2 (05:46):
from that point on, so I overcame it by applying a
lot of what I do as a lawyerusing logic, using evidence,
using science.
I'm a data-driven person.
You're in the law.
You're taught to rely onevidence, not anecdotal stories.
So I had to take the sameapproach.
What's the evidence?
What's the science?
What do we know for sure to bethe case?
(06:08):
Who are the leading experts inthe field?
I went and spent a summer withone of those leading experts in
Santa Barbara, at the Universityof California, Santa Barbara.
I went and spent time withexperts, I researched and I just
approached it the way I wouldany medical condition.
If I had a diagnosis of canceror heart condition, how would
(06:32):
you approach it?
You know you wouldn't takecures off the internet.
You would go find the bestscientists, the best physicians,
the best surgeons.
And so I had to take that sameapproach with my sons.
The experts, Glenn and BobCagle, were renowned experts at
the time.
They still are.
They've written the books.
They had been leadingresearchers in the field, and I
went and spent a summer, droveto Santa Barbara once a week to
(06:55):
spend time with Glenn Cagle.
Speaker 1 (06:57):
From what I understand, you've also written
a book that delves into thisjourney and its many facets.
Is that correct?
Speaker 2 (07:04):
I did.
I wrote a book called theEveryday Advocate, and my book
is really a practical guide.
It took everything I'd learnedas a parent, plus my knowledge
as a civil rights lawyer, and itwas walking parents through the
journey, letting them know ifyou're looking for a trusted
source of information, here itis.
You don't have to Google anddig through 5,000 articles.
Here it is.
(07:26):
You don't have to Google anddig through 5,000 articles.
I've done that research for youand I only use those trusted
researchers and scientists andprovided that information.
Here's what the leadingresearchers are saying about
autism.
Here's what you should know.
Now, whether you decide tofollow something else, that's
okay too, but at least I wantedfolks to have access to that
kind of information.
Sure, I think that's great.
Now, whether you decide tofollow something else, that's
(07:46):
okay too, but at least I wantedfolks to have access to that
kind of information.
Speaker 1 (07:46):
Sure, I think that's great.
Now, with all those powerfultools and resources right at
your fingertips, have you foundways to harness them to advocate
for your autistic child andextend that support to others
across the spectrum as well?
Speaker 2 (08:02):
Oh, absolutely.
Spectrum as well oh, absolutely.
I've used my lawyer skills tonegotiate IEPs, not only for my
son, but I actually started adisability rights practice in my
law firm several years after myson's diagnosis and I went to
IEPs with hundreds of differentfamilies.
I advocated for families intheir school meetings.
I filed lawsuits on behalf offamilies who were in conflict
(08:25):
with their school districts.
I filed federal civil rightsdisability lawsuits against kids
, against school districts wherethere had been discrimination
or even physical injury thatkids suffered in classrooms.
So, absolutely, I've used mylegal background to one
represent families in federalcourt, in state court, in
administrative hearings, totestify before legislative
(08:48):
bodies to help write and shapelegislation at the state and
national level.
Speaker 1 (08:54):
I'm hosting a special this month featuring 30
straight episodes on autism andthe legal system.
It features CIT trainers,judges, former legislators.
Of course, this episode it's asilent crisis.
Many do not realize the immenselegal challenges faced by
autistic individuals.
(09:14):
Have you encountered this atall?
Speaker 2 (09:19):
Well, be more specific.
When you say legal challenges,do you mean individuals on the
spectrum having their legalrights violated?
What do you mean?
Because that's kind of a broadstatement.
Speaker 1 (09:26):
Sure.
I've had in-depth discussionswith numerous parents who've
recounted the profoundlydistressing and often traumatic
experiences of their autisticchildren becoming entangled in
the complexities of the legalsystem, many ending up
incarcerated and enduring anexcruciating and traumatic
(09:46):
ordeal.
They've expressed to me withfrustration that the judges,
attorneys and the entirety ofthe judicial system appeared
utterly uninformed andill-equipped to understand the
nuances of autism, leaving theirchildren to flounder helplessly
through an intimidating,relentless and unforgiving
(10:08):
process.
Have you come across anythinglike this in your journeys?
Speaker 2 (10:12):
Yes, absolutely.
There have been some highprofile cases like that, and you
know everyday people who haveexperienced that yes, arrested
or families who've had kidsremoved from their homes because
(10:40):
the parents have been accusedof conduct that the system has
deemed inappropriate ordangerous for children, when
quite the contrary has been true.
Speaker 1 (10:51):
What are your thoughts on navigating a
situation where legal issuesarise?
Navigating a situation wherelegal issues arise, especially
regarding how we can improve theperception of judges and the
ADA and the district attorney'soffice.
How can we foster a betterunderstanding that when someone
with autism engages in certainbehaviors, it might not stem
(11:11):
from criminal intent, but ratherfrom a lack of understanding or
a belief that the behavior isnormal?
What steps do you think we cantake to shift that perception?
Speaker 2 (11:22):
Oh, it's education and awareness.
I mean that's how we changeperceptions, it's narrative
change right.
It's helping those judges anddistrict attorneys.
In the same way, we've had alot of awareness campaigns
around mental health and we'veseen changes around addiction.
We now have addiction courts.
We have individuals who may beinvolved with some kind of petty
(11:45):
theft or so and they have asubstance abuse problem.
We realized locking thosepeople up was not the answer.
Those people needed drugrehabilitation.
So a lot of district attorneysand courts around this country
have set up those kind ofsubstance abuse courts and
systems so that anybody thatdoes have substance abuse is
looking at a different form ofyou know they have a different
(12:06):
experience in the criminaljustice system and likewise
that's been very effective.
I know people who've gonethrough those kinds of rehab
programs and therefore have notbeen time in traditional jails
or prisons, and we needsomething very similar when it
comes to neurodivergent people.
It's changing that narrativelots of education, lots of
awareness, looking atalternative ways in our criminal
(12:27):
justice system to deal withthose individuals.
Speaker 1 (12:30):
How can we effectively expand awareness and
understanding of autism,especially regarding legal
challenges?
There was an incident where anautistic young man was nearly
arrested in a park due to anofficer mistaking his behavior
for drug use.
So how do we get theinformation and education out
(12:51):
there so that we can drivesystematic change, influence
national policies and create ameaningful impact across the
country?
Speaker 2 (13:02):
Well, a lot of it is funding, and we know budgets,
whether it's at the state levelor the local level, are a
statement of a community'spriorities.
So we changed those budgets.
We saw after George Floyd'smurder where many local police
departments, local cities, localmunicipalities were looking at
how they spent their money.
Did they spend more money onpolice budgets than they did on
social services?
(13:23):
Did they spend more money onpolice than they did, you know,
health care and health resources?
So it's a bottom-up approach.
We can't expect legislators tobe responsive to the needs of
people with autism unless theyknow that the people who vote
for them, their constituents,want prioritized.
(13:44):
They want to see this issueprioritized.
So that's what this advocacy isabout.
It's about galvanizing peoplein their local communities so
that they can bring awarenesseven to their elected officials.
I talk to folks in electedoffice all the time and they had
absolutely no awareness of this.
So they clearly aren't going togo and advocate for a piece of
legislation or for funding ifthey're not made aware of it.
And unfortunately, it falls onthe parents and oftentimes the
(14:05):
parents are already stressed,already overworked, already
overwhelmed.
The reality is, those personalstories that parents tell have a
tremendous impact.
Speaker 1 (14:15):
Yes, they certainly do.
In Las Vegas, there's a judgewho has a system in place that
is the one of a kind.
There's no other one like it inthe country.
This court system effectivelydiverts young children away from
the legal system.
I'm truly puzzled as to whyshe's the only one doing this.
(14:36):
What can we do to expand thisapproach, ensuring that those
who don't belong in the systemare redirected, and how can we
help other judges recognize thevalue of this method that she
has put in place?
Speaker 2 (14:53):
Well, you've got to amplify that story and her
results.
Right, that seems like theperfect story to be on the
nightly news or daytime newsprogram on social media.
You've got to amplify thosestories.
I wasn't aware of that courtmyself.
So those stories have to betold.
And look, we're dealing in a24-7 news cycle.
(15:13):
We're dealing withpost-transition at the
presidential level, so cuttingthrough, getting those stories
to cut through, are difficult,but those of us who have
platforms have to use thoseplatforms to help tell those
stories.
Speaker 1 (15:25):
I'm really glad you brought that up, because you
have a tremendous platform.
What are some of the things youdo?
I know you've written a book,so what are some of the things
you're doing to bring moreawareness and help these people
out?
Speaker 2 (15:37):
So what are some of the things you're doing to bring
more awareness and help thesepeople out?
I use my social media.
I have over a million followersprobably close to a million and
a half followers across socialmedia.
I'm constantly posting.
I use a combination oftraditional media.
I'll be on Sherri Shepherd'sDaytime Syndicated Talk Show the
week of April 7th.
I use local news.
(16:01):
I'm frequently on our localnews stations talking about
autism, talking about theprograms that my nonprofit run.
I use my social media accounts.
I use op-ed pieces.
I use my voice in as manyplaces as I can.
I'm frequently testifyingbefore legislative bodies and
then my non-profit.
We use again our platformthrough our website, through,
(16:24):
again, social media and outreachcommunity boots on the ground,
outreach efforts to raiseawareness.
Speaker 1 (16:30):
I'm glad you brought that up.
I'd love to dive into yourfoundation.
What's it called, and can youexpand on what you do to help
people within your communities?
Speaker 2 (16:40):
It's the Special Needs Network.
It's the California largestsocial justice and disability
rights organization and we workon behalf of kids who have
special needs, neurodivergentkids, their families.
We provide direct services aswell as legislative advocacy.
Speaker 1 (16:54):
How long has it been established and actively making
an impact, and how have you seenit grow?
Speaker 2 (17:00):
We are in our 17th year and we have six offices
across the state of California.
We serve tens of thousands offamilies each year.
Speaker 1 (17:10):
So, having the platform you have, you likely
have countless people reachingout to you.
What are some of the challengesyou've encountered while
working with them and what aresome of the successes you've
achieved in helping them alongthe way?
Speaker 2 (17:25):
Well, a lot of the wins come from helping families
get services.
So whether I'm directlyinvolved or getting them
connected to my nonprofit orgetting them connected to
professionals in their owncommunity, the challenges are
again sometimes, depending onthe community that they live in,
they may not have robustservices.
We're in California, stateslike Massachusetts.
There's some states that havereally robust social service
(17:46):
agencies.
There are other states thatdon't do as well.
So the challenges areunfortunately so.
Much of this is geographicallybased and just depending on
where you physically live candictate what the quality and
quantity of service is availableto you.
Speaker 1 (18:01):
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 youhave, people that are advocating
for legislators to make changeso that we can turn this into a
national rule of law rather thanjust a regional one?
Speaker 2 (18:21):
Oh, absolutely.
I have frequently been in touchwith or testified before
commissions in Washington aswell as the state of California,
so this is definitely both astatewide and national efforts.
My advocacy and I am consultingfederal elected officials, from
(18:42):
congressmen, congresspeople, Ishould say, as well as senators,
governors so my advocacydefinitely extends past the
state of California.
Speaker 1 (18:51):
That's just so good to hear.
Now a lot of people do notunderstand or realize how
difficult it is to get a billthrough the House or through the
Senate.
I have a couple of former Houseof Representatives coming on my
podcast later this month TimMurphy and Patrick Kennedy.
(19:12):
They both talk about how theygot bills passed through and how
difficult it was in gettingthat done.
It's a real tough issue to getthese people to get this done.
So how do you tell people orinform people on what to do to
put the pressure on theserepresentatives to help get this
(19:33):
passed, to help the people thatneed it?
Speaker 2 (19:36):
Elected officials respond to their constituents.
So this has to be an issue thatis where you're able to
galvanize constituents, who thenput pressure on their elected
officials.
You show up at their town hallmeetings, you show up at rallies
.
You make appointments to go into speak with their aides, to
speak with them.
You email them, you call them.
(19:57):
They've got to know that peoplein their districts, the people
that elect them, expect them toprioritize this as an issue.
But if they don't hear fromconstituents, if they're only
hearing about immigration issuesand they're only hearing about
economic issues or gun controlissues, abortion rights,
reproductive rights, all thevarious issues that elected
officials have to contend with,if they're not hearing about the
(20:19):
issue of autism, the criminaljustice system, they're not
going to make it a priority.
Speaker 1 (20:23):
Yes, that totally makes sense.
I've also heard and I'm surethat you've probably helped
people on this as well, I'veheard 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
(20:43):
can do.
But when they have people thatshow up in groups, that
continually keep it in front ofthem and they're consistently
hearing about the issue at hand,then that will keep it on their
mind more often than not andconsider helping.
So do you put together groupslike that, or do you help put
(21:04):
together groups like that, sothey're more informed on what to
do with their representatives?
Speaker 2 (21:09):
Yes, we've actually done training for other
nonprofits.
We've taught other nonprofitshow to build capacity, how to
develop and execute on anadvocacy campaign and strategy.
So we've been heavily involvedin helping grassroots activists.
Speaker 1 (21:22):
That's really good to hear.
Now, are there other thingsthat you do as well to help
these activists or people ingeneral, so they know the
direction to take?
Speaker 2 (21:32):
We host a conference every year.
This year will be April 26thand at that conference we
provide training to advocates.
We do a class called ParentAdvocacy Mentoring.
We do it about two or threetimes a year.
It used to be in person Now alot of us on Zoom where we teach
parents and advocates how to doexactly that.
Speaker 1 (21:55):
I'm curious if you also assist with fundraising
ideas, as that's one of thebiggest challenges I hear about
from various organizations.
They often struggle to raisefunds because, unfortunately,
conditions like autism andcertain mental health issues
aren't visibly apparent.
People tend to donate morereadily when they can see a
(22:16):
physical disability, like withDown syndrome, compared to
supporting someone who doesn'toutwardly appear to have a
problem but is dealing withbrain function challenge.
Do you offer help in this areaas well?
Speaker 2 (22:31):
Well, I definitely have provided a lot of
assistance and consulting andadvice to organizations trying
to do that, but I don't know ifI agree that the funding is only
for individuals who may bepresent with some kind of
visible disability.
So you're going to be hardpressed to find someone whose
(22:57):
life has not been touched byautism.
So I don't think people shouldbe deterred by what I'll call
antiquated notion that becauseautism doesn't present, you know
, like someone who has a limp orsomeone you know who has a cane
, because they're visuallyimpaired, that they can't get
the attention of electedofficials, funders and others
who will support them.
Speaker 1 (23:16):
Oh, I agree that they need support and it will not
stop some from supporting them.
I've just heard fromorganizations that it has been
tougher because one person toldme that he had an autistic child
and another one that wasautistic with Down syndrome, and
the money came pouring in forthe one with Down syndrome more
(23:39):
than the autistic one.
So unfortunately, that's justone challenge they face.
So now I understand that youalso do a lot of public speaking
.
Speaker 2 (23:49):
Yes, I do.
Speaker 1 (23:50):
When you travel to different places and do your
speaking.
What are some of the commonthings that people will talk to
you about after you've finished?
Speaker 2 (23:59):
Things I hear a lot from parents is they're in
search of community, that theyfeel isolated, that they don't
know other parents, they don'tknow where to go for resources
in their community and that theyare in search of community.
They're looking for connectionsboth for themselves as parents
as well as for their child, teenor young adult on the spectrum.
Speaker 1 (24:19):
So what would you like to tell the listeners that
you think is very important?
That they need to know aboutwhat you do and what you're
trying to do to help everyoneyou can with your foundation.
Speaker 2 (24:33):
People should know that people with autism have
tremendous potential.
They can work, they can getmarried, have children, they can
be incredibly productivemembers of society, and so, as a
society, we have an obligationto them, to accept them, to
include them and to learn asmuch as we can about how they
(24:55):
move about the world, how theylearn, how they communicate.
So this notion that somehowautism is a death sentence or
people with autism will have alesser quality of life.
I want people to be disabusedof any of those notions and to
appreciate that individuals onthe spectrum are incredibly
giving and capable of beingproductive, and we can form
(25:19):
really meaningful, productiverelationships with them.
Speaker 1 (25:22):
Absolutely.
Do you have any events comingup in the future?
Speaker 2 (25:27):
We have two.
One is our what we call Toolsto Transformation Conference.
It's going to be April 26th atEl Camino College in Torrance,
california.
That's a free two-dayconference, primarily for the
first day is for professionalsthat work in the health and
human services field.
The second day is all centeredon parents and caregivers.
Then, on May 18th, we have ourannual Pink Pump Fundraising
(25:49):
Gala, where we are raising moneyfor a very unique summer camp
that we host every year, as wellas for victims that were
impacted by the Altadena and LosAngeles wildfires.
That's a ticketed fundraisingevent on Sunday, may 18th.
Speaker 1 (26:04):
That's awesome.
I think that's a really goodthing you're doing.
Well, this has been great,Great conversation, great
information.
I really appreciate you takingthe time to come on.
Thank you so much.
I appreciate it.
It oh, it's been my pleasure.
Thanks again, thanks for takingthe time out of your busy
(26:27):
schedule to listen to our showtoday.
We hope that you enjoyed it asmuch as we enjoyed bringing it
to you.
If you know anyone that wouldlike to tell us their story, we
hope that you enjoyed it as muchas we enjoyed bringing it to
you.
If you know anyone that wouldlike to tell us their story,
send them to TonyMantorcomContact then they can give us
their information so one daythey may be a guest on our show.
(26:49):
One more thing we ask telleveryone everywhere about why
Not Me, the World, theconversations we're having and
the inspiration our guests giveto everyone everywhere that you
are not alone in this world.
Welcome to why Not Me ?
The World Podcast, hosted byTony Mantor, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:30):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismaround the world.
Hi, I'm Tony Mantor.
(00:53):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Today, we're joined by ArevaMartin, a passionate, outspoken
and insightful leader who'smaking a significant impact in
media.
She's a CNN contributor, anaward-winning civil rights
attorney, a civic leader and atelevision host.
(01:13):
Areva is also a prolific writerand best-selling author, with
notable books like the EverydayAdvocate, standing Up for your
Child with Autism and Make itRain.
She's here to share herpersonal story about raising her
autistic son, as well asdetails about her foundation and
upcoming speaking events.
With a wealth of knowledge andexperience, we're truly honored
(01:36):
to have her here with us.
Thanks for joining us.
Speaker 2 (01:39):
Oh, thank you.
Thanks for the invitation.
Speaker 1 (01:41):
Oh, it's my pleasure With all the different things
that you've accomplished.
What led you to advocating forautism and special needs?
Speaker 2 (01:50):
My son, Marty.
He was diagnosed with autismwhen he was two and it was
really a devastating diagnosisfor us.
I didn't know much about autism.
No one in my inner circle hadever had, or at least shared
with me that they had a child onthe spectrum.
So as I was trying to getinformation to help Marty, I
kept running into a lot of brickwalls.
(02:11):
I kept running into folks whohad more questions than they had
answers, and it was veryfrustrating for me.
It became clear to me thatthere was not going to be anyone
that would save me, that I hadto become the answer to my own
questions.
And that led me on a journey tolearn as much as I could about
the diagnosis, the treatment,the services, to learn what the
(02:31):
federal and state law had to sayabout children with special
needs, to learn what legislationwas out there, what funding was
out there.
So it just made me become anexpert.
Speaker 1 (02:42):
How old is your son now?
Speaker 2 (02:44):
He's a young adult.
Now he is 25.
Speaker 1 (02:47):
So, along this journey, how has your approach
evolved as you've navigated theunknown, learned and grown over
the years?
What significant shifts haveyou observed in your perspective
, methods or growth, along withworking with others, compared to
where you first started?
Speaker 2 (03:08):
Well, I definitely have seen the industry evolve.
I've seen people be a lot moreopen and honest and transparent.
Less stigma, less secrecy, lessnegative association with
individuals on the spectrum,more acceptance.
I've seen self-advocates getheavily involved to speak up for
(03:30):
what's important to them, soit's not just parents speaking
on their behalf.
I've seen more funding pourinto nonprofits and
community-based organizations.
I've seen more research not somuch around cure, because when I
started my journey, all thefocus was on how do we cure this
.
Now the focus is much more onhow do we integrate individuals
on the spectrum into ourcommunity.
(03:51):
How do we make them feel lovedand welcomed?
How do we adjust our movietheaters, our workplaces and
other community public spaces toaccommodate people who are
neurodivergent.
So I've seen the languagechange.
I've seen the symbolism change.
There have been massive changes.
Speaker 1 (04:08):
What were some of the initial challenges you
encountered?
How did you tackle them andeventually overcome them?
Speaker 2 (04:16):
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 ofdisinformation.
So one of the challenges wasjust weeding through all the
information.
You could do a Google search onGoogle.
You would do a search on Googleand you'd get literally
thousands and thousands ofresponses.
So it was a time where peoplewere trying to find their way,
(04:39):
and so every day, someone wouldsend me a story.
Oh, did you see this story abouta woman whose son had autism
and they drank hot water withlemon for five days and they
cured their kid.
So it was all of these, youknow, wives tales, urban tales
about cures, and that was veryconfusing because, as a good
parent, of course drinking hotwater with lemon was going to be
(05:02):
the answer.
Of course you wanted to do that, but I quickly learned that
it's a neurological conditionand if you have a stroke,
drinking hot water with lemonmight make you feel good, but
it's not going to cure you fromthe paralysis that you may
experience as a result of astroke.
So I had to accept that peoplewere like me, on their own
journeys.
They were looking for answers,they were trying to be helpful,
(05:31):
but that autism is a spectrumdisorder and there's no
one-size-fits-all approach to it.
And I just had to say to myfriends very politely thank you
for that story.
I'm going to take a look at itand keep moving right.
Speaker 1 (05:38):
So, with all those challenges, plus with the input
that was coming to you, what wasthe next thing you did and how
did you address it?
Speaker 2 (05:46):
from that point on, so I overcame it by applying a
lot of what I do as a lawyerusing logic, using evidence,
using science.
I'm a data-driven person.
You're in the law.
You're taught to rely onevidence, not anecdotal stories.
So I had to take the sameapproach.
What's the evidence?
What's the science?
What do we know for sure to bethe case?
(06:08):
Who are the leading experts inthe field?
I went and spent a summer withone of those leading experts in
Santa Barbara, at the Universityof California, Santa Barbara.
I went and spent time withexperts, I researched and I just
approached it the way I wouldany medical condition.
If I had a diagnosis of canceror heart condition, how would
(06:32):
you approach it?
You know you wouldn't takecures off the internet.
You would go find the bestscientists, the best physicians,
the best surgeons.
And so I had to take that sameapproach with my sons.
The experts, Glenn and BobCagle, were renowned experts at
the time.
They still are.
They've written the books.
They had been leadingresearchers in the field, and I
went and spent a summer, droveto Santa Barbara once a week to
(06:55):
spend time with Glenn Cagle.
Speaker 1 (06:57):
From what I understand, you've also written
a book that delves into thisjourney and its many facets.
Is that correct?
Speaker 2 (07:04):
I did.
I wrote a book called theEveryday Advocate, and my book
is really a practical guide.
It took everything I'd learnedas a parent, plus my knowledge
as a civil rights lawyer, and itwas walking parents through the
journey, letting them know ifyou're looking for a trusted
source of information, here itis.
You don't have to Google anddig through 5,000 articles.
Here it is.
(07:26):
You don't have to Google anddig through 5,000 articles.
I've done that research for youand I only use those trusted
researchers and scientists andprovided that information.
Here's what the leadingresearchers are saying about
autism.
Here's what you should know.
Now, whether you decide tofollow something else, that's
okay too, but at least I wantedfolks to have access to that
kind of information.
Sure, I think that's great.
Now, whether you decide tofollow something else, that's
(07:46):
okay too, but at least I wantedfolks to have access to that
kind of information.
Speaker 1 (07:46):
Sure, I think that's great.
Now, with all those powerfultools and resources right at
your fingertips, have you foundways to harness them to advocate
for your autistic child andextend that support to others
across the spectrum as well?
Speaker 2 (08:02):
Oh, absolutely.
Spectrum as well oh, absolutely.
I've used my lawyer skills tonegotiate IEPs, not only for my
son, but I actually started adisability rights practice in my
law firm several years after myson's diagnosis and I went to
IEPs with hundreds of differentfamilies.
I advocated for families intheir school meetings.
I filed lawsuits on behalf offamilies who were in conflict
(08:25):
with their school districts.
I filed federal civil rightsdisability lawsuits against kids
, against school districts wherethere had been discrimination
or even physical injury thatkids suffered in classrooms.
So, absolutely, I've used mylegal background to one
represent families in federalcourt, in state court, in
administrative hearings, totestify before legislative
(08:48):
bodies to help write and shapelegislation at the state and
national level.
Speaker 1 (08:54):
I'm hosting a special this month featuring 30
straight episodes on autism andthe legal system.
It features CIT trainers,judges, former legislators.
Of course, this episode it's asilent crisis.
Many do not realize the immenselegal challenges faced by
autistic individuals.
(09:14):
Have you encountered this atall?
Speaker 2 (09:19):
Well, be more specific.
When you say legal challenges,do you mean individuals on the
spectrum having their legalrights violated?
What do you mean?
Because that's kind of a broadstatement.
Speaker 1 (09:26):
Sure.
I've had in-depth discussionswith numerous parents who've
recounted the profoundlydistressing and often traumatic
experiences of their autisticchildren becoming entangled in
the complexities of the legalsystem, many ending up
incarcerated and enduring anexcruciating and traumatic
(09:46):
ordeal.
They've expressed to me withfrustration that the judges,
attorneys and the entirety ofthe judicial system appeared
utterly uninformed andill-equipped to understand the
nuances of autism, leaving theirchildren to flounder helplessly
through an intimidating,relentless and unforgiving
(10:08):
process.
Have you come across anythinglike this in your journeys?
Speaker 2 (10:12):
Yes, absolutely.
There have been some highprofile cases like that, and you
know everyday people who haveexperienced that yes, arrested
or families who've had kidsremoved from their homes because
(10:40):
the parents have been accusedof conduct that the system has
deemed inappropriate ordangerous for children, when
quite the contrary has been true.
Speaker 1 (10:51):
What are your thoughts on navigating a
situation where legal issuesarise?
Navigating a situation wherelegal issues arise, especially
regarding how we can improve theperception of judges and the
ADA and the district attorney'soffice.
How can we foster a betterunderstanding that when someone
with autism engages in certainbehaviors, it might not stem
(11:11):
from criminal intent, but ratherfrom a lack of understanding or
a belief that the behavior isnormal?
What steps do you think we cantake to shift that perception?
Speaker 2 (11:22):
Oh, it's education and awareness.
I mean that's how we changeperceptions, it's narrative
change right.
It's helping those judges anddistrict attorneys.
In the same way, we've had alot of awareness campaigns
around mental health and we'veseen changes around addiction.
We now have addiction courts.
We have individuals who may beinvolved with some kind of petty
(11:45):
theft or so and they have asubstance abuse problem.
We realized locking thosepeople up was not the answer.
Those people needed drugrehabilitation.
So a lot of district attorneysand courts around this country
have set up those kind ofsubstance abuse courts and
systems so that anybody thatdoes have substance abuse is
looking at a different form ofyou know they have a different
(12:06):
experience in the criminaljustice system and likewise
that's been very effective.
I know people who've gonethrough those kinds of rehab
programs and therefore have notbeen time in traditional jails
or prisons, and we needsomething very similar when it
comes to neurodivergent people.
It's changing that narrativelots of education, lots of
awareness, looking atalternative ways in our criminal
(12:27):
justice system to deal withthose individuals.
Speaker 1 (12:30):
How can we effectively expand awareness and
understanding of autism,especially regarding legal
challenges?
There was an incident where anautistic young man was nearly
arrested in a park due to anofficer mistaking his behavior
for drug use.
So how do we get theinformation and education out
(12:51):
there so that we can drivesystematic change, influence
national policies and create ameaningful impact across the
country?
Speaker 2 (13:02):
Well, a lot of it is funding, and we know budgets,
whether it's at the state levelor the local level, are a
statement of a community'spriorities.
So we changed those budgets.
We saw after George Floyd'smurder where many local police
departments, local cities, localmunicipalities were looking at
how they spent their money.
Did they spend more money onpolice budgets than they did on
social services?
(13:23):
Did they spend more money onpolice than they did, you know,
health care and health resources?
So it's a bottom-up approach.
We can't expect legislators tobe responsive to the needs of
people with autism unless theyknow that the people who vote
for them, their constituents,want prioritized.
(13:44):
They want to see this issueprioritized.
So that's what this advocacy isabout.
It's about galvanizing peoplein their local communities so
that they can bring awarenesseven to their elected officials.
I talk to folks in electedoffice all the time and they had
absolutely no awareness of this.
So they clearly aren't going togo and advocate for a piece of
legislation or for funding ifthey're not made aware of it.
And unfortunately, it falls onthe parents and oftentimes the
(14:05):
parents are already stressed,already overworked, already
overwhelmed.
The reality is, those personalstories that parents tell have a
tremendous impact.
Speaker 1 (14:15):
Yes, they certainly do.
In Las Vegas, there's a judgewho has a system in place that
is the one of a kind.
There's no other one like it inthe country.
This court system effectivelydiverts young children away from
the legal system.
I'm truly puzzled as to whyshe's the only one doing this.
(14:36):
What can we do to expand thisapproach, ensuring that those
who don't belong in the systemare redirected, and how can we
help other judges recognize thevalue of this method that she
has put in place?
Speaker 2 (14:53):
Well, you've got to amplify that story and her
results.
Right, that seems like theperfect story to be on the
nightly news or daytime newsprogram on social media.
You've got to amplify thosestories.
I wasn't aware of that courtmyself.
So those stories have to betold.
And look, we're dealing in a24-7 news cycle.
(15:13):
We're dealing withpost-transition at the
presidential level, so cuttingthrough, getting those stories
to cut through, are difficult,but those of us who have
platforms have to use thoseplatforms to help tell those
stories.
Speaker 1 (15:25):
I'm really glad you brought that up, because you
have a tremendous platform.
What are some of the things youdo?
I know you've written a book,so what are some of the things
you're doing to bring moreawareness and help these people
out?
Speaker 2 (15:37):
So what are some of the things you're doing to bring
more awareness and help thesepeople out?
I use my social media.
I have over a million followersprobably close to a million and
a half followers across socialmedia.
I'm constantly posting.
I use a combination oftraditional media.
I'll be on Sherri Shepherd'sDaytime Syndicated Talk Show the
week of April 7th.
I use local news.
(16:01):
I'm frequently on our localnews stations talking about
autism, talking about theprograms that my nonprofit run.
I use my social media accounts.
I use op-ed pieces.
I use my voice in as manyplaces as I can.
I'm frequently testifyingbefore legislative bodies and
then my non-profit.
We use again our platformthrough our website, through,
(16:24):
again, social media and outreachcommunity boots on the ground,
outreach efforts to raiseawareness.
Speaker 1 (16:30):
I'm glad you brought that up.
I'd love to dive into yourfoundation.
What's it called, and can youexpand on what you do to help
people within your communities?
Speaker 2 (16:40):
It's the Special Needs Network.
It's the California largestsocial justice and disability
rights organization and we workon behalf of kids who have
special needs, neurodivergentkids, their families.
We provide direct services aswell as legislative advocacy.
Speaker 1 (16:54):
How long has it been established and actively making
an impact, and how have you seenit grow?
Speaker 2 (17:00):
We are in our 17th year and we have six offices
across the state of California.
We serve tens of thousands offamilies each year.
Speaker 1 (17:10):
So, having the platform you have, you likely
have countless people reachingout to you.
What are some of the challengesyou've encountered while
working with them and what aresome of the successes you've
achieved in helping them alongthe way?
Speaker 2 (17:25):
Well, a lot of the wins come from helping families
get services.
So whether I'm directlyinvolved or getting them
connected to my nonprofit orgetting them connected to
professionals in their owncommunity, the challenges are
again sometimes, depending onthe community that they live in,
they may not have robustservices.
We're in California, stateslike Massachusetts.
There's some states that havereally robust social service
(17:46):
agencies.
There are other states thatdon't do as well.
So the challenges areunfortunately so.
Much of this is geographicallybased and just depending on
where you physically live candictate what the quality and
quantity of service is availableto you.
Speaker 1 (18:01):
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 youhave, people that are advocating
for legislators to make changeso that we can turn this into a
national rule of law rather thanjust a regional one?
Speaker 2 (18:21):
Oh, absolutely.
I have frequently been in touchwith or testified before
commissions in Washington aswell as the state of California,
so this is definitely both astatewide and national efforts.
My advocacy and I am consultingfederal elected officials, from
(18:42):
congressmen, congresspeople, Ishould say, as well as senators,
governors so my advocacydefinitely extends past the
state of California.
Speaker 1 (18:51):
That's just so good to hear.
Now a lot of people do notunderstand or realize how
difficult it is to get a billthrough the House or through the
Senate.
I have a couple of former Houseof Representatives coming on my
podcast later this month TimMurphy and Patrick Kennedy.
(19:12):
They both talk about how theygot bills passed through and how
difficult it was in gettingthat done.
It's a real tough issue to getthese people to get this done.
So how do you tell people orinform people on what to do to
put the pressure on theserepresentatives to help get this
(19:33):
passed, to help the people thatneed it?
Speaker 2 (19:36):
Elected officials respond to their constituents.
So this has to be an issue thatis where you're able to
galvanize constituents, who thenput pressure on their elected
officials.
You show up at their town hallmeetings, you show up at rallies
.
You make appointments to go into speak with their aides, to
speak with them.
You email them, you call them.
(19:57):
They've got to know that peoplein their districts, the people
that elect them, expect them toprioritize this as an issue.
But if they don't hear fromconstituents, if they're only
hearing about immigration issuesand they're only hearing about
economic issues or gun controlissues, abortion rights,
reproductive rights, all thevarious issues that elected
officials have to contend with,if they're not hearing about the
(20:19):
issue of autism, the criminaljustice system, they're not
going to make it a priority.
Speaker 1 (20:23):
Yes, that totally makes sense.
I've also heard and I'm surethat you've probably helped
people on this as well, I'veheard 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
(20:43):
can do.
But when they have people thatshow up in groups, that
continually keep it in front ofthem and they're consistently
hearing about the issue at hand,then that will keep it on their
mind more often than not andconsider helping.
So do you put together groupslike that, or do you help put
(21:04):
together groups like that, sothey're more informed on what to
do with their representatives?
Speaker 2 (21:09):
Yes, we've actually done training for other
nonprofits.
We've taught other nonprofitshow to build capacity, how to
develop and execute on anadvocacy campaign and strategy.
So we've been heavily involvedin helping grassroots activists.
Speaker 1 (21:22):
That's really good to hear.
Now, are there other thingsthat you do as well to help
these activists or people ingeneral, so they know the
direction to take?
Speaker 2 (21:32):
We host a conference every year.
This year will be April 26thand at that conference we
provide training to advocates.
We do a class called ParentAdvocacy Mentoring.
We do it about two or threetimes a year.
It used to be in person Now alot of us on Zoom where we teach
parents and advocates how to doexactly that.
Speaker 1 (21:55):
I'm curious if you also assist with fundraising
ideas, as that's one of thebiggest challenges I hear about
from various organizations.
They often struggle to raisefunds because, unfortunately,
conditions like autism andcertain mental health issues
aren't visibly apparent.
People tend to donate morereadily when they can see a
(22:16):
physical disability, like withDown syndrome, compared to
supporting someone who doesn'toutwardly appear to have a
problem but is dealing withbrain function challenge.
Do you offer help in this areaas well?
Speaker 2 (22:31):
Well, I definitely have provided a lot of
assistance and consulting andadvice to organizations trying
to do that, but I don't know ifI agree that the funding is only
for individuals who may bepresent with some kind of
visible disability.
So you're going to be hardpressed to find someone whose
(22:57):
life has not been touched byautism.
So I don't think people shouldbe deterred by what I'll call
antiquated notion that becauseautism doesn't present, you know
, like someone who has a limp orsomeone you know who has a cane
, because they're visuallyimpaired, that they can't get
the attention of electedofficials, funders and others
who will support them.
Speaker 1 (23:16):
Oh, I agree that they need support and it will not
stop some from supporting them.
I've just heard fromorganizations that it has been
tougher because one person toldme that he had an autistic child
and another one that wasautistic with Down syndrome, and
the money came pouring in forthe one with Down syndrome more
(23:39):
than the autistic one.
So unfortunately, that's justone challenge they face.
So now I understand that youalso do a lot of public speaking
.
Speaker 2 (23:49):
Yes, I do.
Speaker 1 (23:50):
When you travel to different places and do your
speaking.
What are some of the commonthings that people will talk to
you about after you've finished?
Speaker 2 (23:59):
Things I hear a lot from parents is they're in
search of community, that theyfeel isolated, that they don't
know other parents, they don'tknow where to go for resources
in their community and that theyare in search of community.
They're looking for connectionsboth for themselves as parents
as well as for their child, teenor young adult on the spectrum.
Speaker 1 (24:19):
So what would you like to tell the listeners that
you think is very important?
That they need to know aboutwhat you do and what you're
trying to do to help everyoneyou can with your foundation.
Speaker 2 (24:33):
People should know that people with autism have
tremendous potential.
They can work, they can getmarried, have children, they can
be incredibly productivemembers of society, and so, as a
society, we have an obligationto them, to accept them, to
include them and to learn asmuch as we can about how they
(24:55):
move about the world, how theylearn, how they communicate.
So this notion that somehowautism is a death sentence or
people with autism will have alesser quality of life.
I want people to be disabusedof any of those notions and to
appreciate that individuals onthe spectrum are incredibly
giving and capable of beingproductive, and we can form
(25:19):
really meaningful, productiverelationships with them.
Speaker 1 (25:22):
Absolutely.
Do you have any events comingup in the future?
Speaker 2 (25:27):
We have two.
One is our what we call Toolsto Transformation Conference.
It's going to be April 26th atEl Camino College in Torrance,
california.
That's a free two-dayconference, primarily for the
first day is for professionalsthat work in the health and
human services field.
The second day is all centeredon parents and caregivers.
Then, on May 18th, we have ourannual Pink Pump Fundraising
(25:49):
Gala, where we are raising moneyfor a very unique summer camp
that we host every year, as wellas for victims that were
impacted by the Altadena and LosAngeles wildfires.
That's a ticketed fundraisingevent on Sunday, may 18th.
Speaker 1 (26:04):
That's awesome.
I think that's a really goodthing you're doing.
Well, this has been great,Great conversation, great
information.
I really appreciate you takingthe time to come on.
Thank you so much.
I appreciate it.
It oh, it's been my pleasure.
Thanks again, thanks for takingthe time out of your busy
(26:27):
schedule to listen to our showtoday.
We hope that you enjoyed it asmuch as we enjoyed bringing it
to you.
If you know anyone that wouldlike to tell us their story, we
hope that you enjoyed it as muchas we enjoyed bringing it to
you.
If you know anyone that wouldlike to tell us their story,
send them to TonyMantorcomContact then they can give us
their information so one daythey may be a guest on our show.
(26:49):
One more thing we ask telleveryone everywhere about why
Not Me, the World, theconversations we're having and
the inspiration our guests giveto everyone everywhere that you
are not alone in this world.
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