Discover the inspiring journeys of Marlene and Judi, two extraordinary advocates reshaping the autism community. Judi, the mastermind behind Autism and Entertainment and leader of the Orange County Asperger Support Group, reflects on her dual role as a mother and high-tech marketing professional. Marlene, with her rich experience in animation as a producer and writer, shares her vision for bridging education with the entertainment industry through her work with the Center for Learning Unlimited. Together, they reveal the story behind their innovative autism and entertainment conference that has become a cornerstone for community and connection.
Experience the magic as we recount the triumphs of the autism conference, initially conceived during a casual meeting in May 2022 and growing into an unexpected success with over 400 attendees. This vibrant gathering, graced by speakers like Jorge Gutierrez, was more than just an event; it was a celebration of belonging, healing, and joyful reunions. Marlene and Judi’s pioneering efforts underscore the transformative power of networking, as the conference sparked organic partnerships and lifelong friendships, providing a platform for hope and collaboration within the entertainment industry.
Embrace the future of autism advocacy and employment as we explore innovative strategies for personal and professional growth. Exciting initiatives, such as incorporating Toastmasters programs, are enhancing communication skills and empowering individuals on the spectrum to overcome employment challenges. By addressing concerns like the fear of losing benefits, these efforts are paving the way for a more inclusive workforce. Through the spirit of collaboration and community building, this episode invites listeners to participate in a movement where success is shared, and everyone thrives together.
• Importance of community support and networking
• Personal journeys advocating for autism in entertainment
• Statistics on unemployment in the autistic community and the need for change
• Themes of empowerment and the "superpowers" of autistic individuals
• Successful outcomes from the Autism and Entertainment Conference
• Addressing fears surrounding failure as part of personal and professional growth
• Future projects and continued advocacy for autistic individuals
• Insight into Social Security challenges faced by autistic adults
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
The SJ Child Show is Backford's 13th season.
Join Sarah Bradford and the SJChild Show team as they explore
the world of autism and sharestories of hope and inspiration.
This season we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
(00:20):
Go to sjchildsorg to donate andto get more information.
Congratulations on 2024's20,000 downloads and 300
episodes.
Hi and welcome to the SJ Childsshow today.
I'm so honored to be meetingwith Marlene and Judy and they
(00:43):
are coming from the same areabut we're going to be talking a
little bit about some projectsthat they both work on or they
may be working on separately andreally just kind of uncover why
they are amazing, wonderfulguests today.
So, without further ado, let'shave an introduction.
(01:03):
I have met with Marlene andwe've been able to talk and get
to know one another.
This is my first time gettingto know Judy and I'm really
honored to spend this time inthis space with them to really
uncover the services thatthey're providing in the autism
(01:24):
community and just really forthe community when they're
providing in the autismcommunity and just really for
the community when we look at itin general.
So, yeah, let's start with that.
Marlene, please give us anintroduction and let us know a
little bit about yourself.
Speaker 2 (01:38):
Well, I'm going to start out by introducing Judy,
because without Judy I wouldn'tbe here.
So Judy is the founder ofAutism and Entertainment and
she's also the president ofOrange County Asperger Support
Group, and I am privileged towork with Judy on both of those
(02:01):
endeavors.
And I live in Los Angeles,judy's in Orange County, so
we're neighbors by about 50 to75 miles of a buffer in between.
But we work on a lot ofprojects together and I'll turn
it over to Judy to give morecolor and history to our
(02:23):
collaboration, more color andhistory to our collaboration.
Speaker 3 (02:26):
Wonderful.
Okay, marlene, you got tointroduce yourself as well, so I
guess what Marlene brought upis that I run Orange County
Asperger's support group andautism in entertainment and
(02:49):
autism in entertainment.
Just a little personalbackground is I'm the mother of
a 33-year-old son withhigh-functioning autism, which
is where my focus in thiscommunity comes from, and my
background is I have had acareer as an executive in
high-tech marketing andeducational background from UCLA
(03:15):
in computer science andCarnegie Mellon in business
administration, and I think thatgives me the skill set that
enables me to get things done,which I think has been critical
in helping the community inSouthern California move forward
(03:37):
on a lot of different frontsrelated to the challenges that
families have as they try andimprove their quality of life
when dealing with some of thechallenges of autism.
Speaker 1 (03:52):
I love that.
Thank you so much for your workand for being here and for
bringing Marlene along on thisjourney with us.
Yeah, it's, it's incredible,and the friends and community
that I have found ininterviewing and working with so
(04:14):
many people throughout thespectrums related opportunities,
if you will has just reallyshowed me the closeness that we
all can find in one another,with our community, and that's
why we love to do shows likethis to highlight all of the
(04:36):
opportunities and services thatare out there.
The resources so we have somereally great resources and
things to talk about today forsure.
So, marlene, now we get to getyour little introduction, or big
introduction.
Speaker 2 (04:54):
Okay, well, I am a producer, writer, creative
executive who's relatively newto autism.
As a cause and part of mycareer, I started with a
non-profit called Center forLearning Unlimited about four
(05:17):
and a half years ago.
I was brought on through afriend of mine who's teaching
there, a friend from animation.
She was teaching and sheenlisted me as a consultant for
an animation program for adultson the spectrum to learn
fundamentals of animation aspotential career path, and so my
(05:39):
background is very heavy inanimation and merchandise-driven
entertainment A lot of the nerdbrands that your viewers
probably have heard of, such asSonic, the Hedgehog and Yo-Kai
Watch and Power Rangers, a lotof boys' action brands, and so
the Center for LearningUnlimited training program
(06:01):
seemed to be at a place in theirdevelopment where they needed
an entertainment industryliaison to bridge the gap
between the education that thestudents were receiving and then
transferring into the realworld when they graduated from
this three-year program.
So I was working as a consultantfor Center for Learning
(06:24):
Unlimited, as well as BrainstormProductions, which is the four
hire studio that we started forthe graduates of CLU and through
a grant program.
That's how Judy and I becameacquainted, became acquainted,
(06:50):
so Brainstorm and CLU received agrant from the California
Department of DevelopmentalServices and Judy, through
Orange County Asperger's SupportGroup, received a similar grant
, also from the DDS, and we wereintroduced through a couple of
different avenues.
We were running in the samecircle, so we were bound to meet
at some point in time and Judywas already underway with
(07:14):
preparations for the firstconference, which took place on
April 5th, and I invited myselfto join and never left here I am
the end, I love it.
Speaker 1 (07:26):
Invited myself to join and never left.
And, you know, let's bring thatconference up because that was
the basically the first time Ihad an introduction to autism
and entertainment through ourmutual friend, harry James
O'Kelly.
Love you so much, harry, andyou know, I not only saw that
(07:47):
she was there, but Danny Bowmanand Shannon Penrod and all of my
friends that were there, and Iwas like, oh my gosh, you know,
zara Astra and Scott Steindorf,and some of some people that I
just love and adore.
And then I've had, you know,had on the podcast and in so
many events in the past, and Isaid to myself I should be at
(08:07):
this conference right now withall of my friends here.
But, yeah, so it was just Ihave to get to know what's going
on here.
And then, of course, harry,doing the wonderful thing she
does, you know, sent me 10back-to-back text messages with
all of your names and how to getahold of you and and all of
that.
And so that's where I startedto to really, you know, look in
(08:31):
and see, oh my gosh, this issomething.
Not only that, it's so importantand so necessary for
representation and it also isoffering opportunities for
adults on the autism spectrum,and that's really necessary for
families to understand that.
(08:52):
You know your child doesn'thave to grow up and not get a
job or work at the grocery storeas a bagger, and that's the
only type of employment they canreceive.
You know what are theirpassions, what are their loves,
what do you find them doingevery day, all day?
Excuse me and follow that andreally push those dreams and
(09:17):
those strengths.
And there are some bigopportunities out in the world
for those types of individuals.
Judy, what kind of what droveyou, or what maybe your son's
interests, to really pursue thisin the entertainment or just in
all of it?
Speaker 3 (09:36):
Sure, let me just kind of take a couple steps back
and say that when I becamepresident of the Orange County
Asperger's Support Group as amarketing person, which I
mentioned I was the first thingI did was a survey, and from
that survey the thing that cameout which I was surprised about
because my son was not out inthe working world, but that was
(10:02):
the number one issue wasemployment of our membership,
and over the course of time Ifocused a lot of energy on
employment and autism, learningthat between 80 and 85% of the
autistic community adults wereunemployed or underemployed, and
so working on trying to improveemployment became a passion for
(10:28):
me and I did a variety ofthings in that area.
I ran something called CareerClub that was focused on adults
who had graduated from collegebut needed to start their
journey, finding employment.
So that was very top of mind.
And again, as a marketingperson, I saw that the strategy
(10:52):
that was being used by a lot oforganizations was very
horizontal.
So we need to create jobsversus.
We need to create jobs inhealthcare, we need to create
jobs in law, we need to createjobs in technology, and so I
thought I was seeing success forthe higher functioning autistic
(11:16):
community In which I know canbe a sensitive term, but in the
technology space.
So there was an organizationcalled.
It was founded by microsoft andand companies like dell and hp,
hp and sap have all been eagerto employ neurodivergent
(11:41):
individuals in theirorganization and they created
the Autism at Work roundtable,which now I think is called
Neurodiversity at Work to createemployment opportunities for
individuals on the autismspectrum.
And so many leaders in that techspace are people on the
spectrum, such as Bill Gates orSteve Jobs.
(12:05):
So there have been, you know, avariety of folks who maybe
because of just some of thecharacteristics of people on the
spectrum, were very talented inthe tech space.
So I saw that and when my songraduated from college, from Cal
(12:26):
State, fullerton, with a degreein television and film, I
started realizing how manypeople in the entertainment
space that were drawing peoplewith autism to that space, who
had a passionate interest invideo games, a passionate
(12:48):
interest in animation, and Ithought, well, maybe what we
should do is take an approachthat was vertical and just focus
in on the entertainment spaceand try and expand employment
for individuals on the spectrumin that space.
So that was my initial conceptand the way I thought about
(13:12):
doing it again pulling from mycareer experience, was in high
tech there are oftentimes thingscalled working groups that are
created and a lot of timesyou'll have coopetition, you'll
have competitors participate inthat, because what they're
trying to do is do someinitiative for the industry.
(13:32):
A lot of time it's standardsrelated.
So I was involved in somestorage standards working groups
and I thought, you know, thatmight be the right model for how
to take this initiative forward, because I felt that it wasn't
going to just be me.
I needed to create this groupof people who could help push
(13:54):
this initiative forward.
And if you ever saw Castaway, Ilove it how Tom Hanks' character
talks about how you just kindof wait and then that sail,
which happened to be aport-a-potty, shows up on the
island and he finds his way andit becomes a sail.
(14:17):
And so for me, I startedsocializing this idea and found
other people that would beinterested.
And then one day I went into anOCSG meeting it was a virtual
support meeting and a womannamed Patricia Turney showed up
and she introduced herself andshe said that she happened to be
(14:38):
the chair of the Board ofExceptional Minds, that she
happened to be the chair of theboard of exceptional minds and I
said, ah, I had heard aboutexceptional minds but I didn't
know anyone in exceptional minds.
So I talked to Patricia and sowe started working on launching
this work group and and webrought in a company called
(14:59):
Zavacon, who had been my partneron Career Club and they had
both had experience in theentertainment space.
So I thought they're jobdevelopers in the entertainment
space.
And there were people I met atD&D games Dungeons and Dragons
games and different people who Ibrought in and said, hey, you
(15:19):
want to help us try and makesomething happen.
And so in May of 2022, we hadour first meeting of the Autism
and Entertainment Work Group andthat was the starting point for
the idea of the work group.
Probably I should breathe and Ican explain the conference in a
(15:44):
few minutes, but kind of letyou process all that.
Speaker 1 (15:51):
I love those approaches that you took too.
It's really fascinating to hearyour mindset and the way you
really played it out and how you, you know, put in different
models or different ideas of howyou were going to create it,
which is wonderful for mebecause I'm just starting a
nonprofit and I feel like thebaby is baby infant.
(16:11):
I don't know what I'm doing,but I need these ideas, you know
, I need to know what might workand what might not, and and so
it's great for for learning inall types of ways.
But, yeah, just fascinating tohear those, those steps that you
took, marlene, what, how didyou, when did you kind of find
(16:32):
your way in and what did thatlook like?
I was late to the party.
Speaker 2 (16:36):
I didn't come in until summer 2023-ish around
that time and that was due tothe when I was working with
Brainstorm and CLU.
We were and my dog is verypassionate on this.
(16:58):
She loves to talk about originstories, so you might hear her
like a Greek chorus in the back.
But there you go.
But our program at CLU,brainstorm, was getting underway
, so our grant from DDS wasrelated to research on remote
(17:23):
job coaching, and so we werestarting in earnest at that
point in time.
And then the head of Bra aboutJudy and what she was doing with
the conference, because we hadsimilar grants.
(17:44):
But then David Siegel said, oh,you should really get to know
Judy Utah because she's puttingtogether the autism and
entertainment conference.
So I thought, okay, to to to.
Very noteworthy sources havetold me to go to Judy, so I will
do that today.
And then that's what I did.
(18:05):
And so Judy allowed me to go toone of the planning meetings,
the virtual planning meetings,and that's how it started.
And I asked some questionsbecause I am a nosy, busy body,
and so I had a million questionsand I was jumping out of my
seat because it just all soundedso exciting and I couldn't wait
(18:28):
to contribute in some way.
So I asked a number of rapidfire questions about the plans
for our press release and socialmedia and all kinds of things
that are pretty standard in thebusiness of shameless promotion
that I am in, which is alsomeant to sell toys to children.
(18:49):
So everything's all about theeyeballs and how many people you
can get to hear your message sothey'll run out and buy video
games and toys, and so this is aJudy's is a group of benevolent
human beings who are all aboutthe message and not as much
(19:09):
about getting the message out.
Yeah, shameless self promotion,which is where I came in, and
so I became the mouthpiece forthe organization in the sense
that I was handling sponsorshipsand PR and then continued on
(19:31):
with community outreach andthings of that nature.
Speaker 3 (19:35):
So I just want to kind of yeah, let me kind of
work back a little bit.
Yeah, let me kind of work backa little bit.
So in November in May of 2022,we had our first meeting.
We decided we wanted to have aconference.
That summer we found out about,one of which was our conference
.
The other was the CLU projectabout remote job coaching, and
(20:10):
so we applied for the grant andgot the grant, marlene and I,
when there were about 50 or soorganizations who got these
grants, about 50 or soorganizations who got these
grants, and DDS did a reallyphenomenal job of holding
quarterly meetings with thesedifferent teams and featuring
different groups.
And so that's where I heardJenny from CLU speak and I was
(20:36):
like picking out.
There were maybe three or fourdifferent grants where the
individual involved had someentertainment related connection
, and so, anytime, I wasstarting from ground zero.
When I got started with thiscommunity, I didn't really know.
You know, I had relatives inthe industry, but that was about
(20:57):
it.
I had relatives in the industry, but that was about it.
And so there were just thesebreadcrumbs that kept on
dropping and I would just followthem.
And so, whether that wasreaching out to CLU and Jenny,
or when Marlene showed up, itwas another gift Because I knew
(21:18):
that we you know, I'm amarketing person I knew we
needed to do PR, but I didn'tknow who was going to do it and
I had budgets set aside to do it.
And then Marlene shows up and Isaid, okay, this is the person
that's going to be doing this,and she had.
When we started, we didn't knowwho was going to come to the
conference.
We were putting on a conferencefor 400 people, but we didn't
(21:44):
know who was going to be there,who was going to speak, who was
going to do anything, and so wewere having to create this all
from nothing.
And it was really an example ofhow important networking and
promotion is, because it wasthrough.
You know, I saw that Marlenehad thousands and tens of
thousands of followers and Ithought, well, once she starts
(22:05):
talking about this, people aregoing to find us, and we now
have a database of over 1,600people.
And we had more.
We were turning people away forthe conference because we didn't
have enough space away for theconference because we didn't
(22:25):
have enough space, and so it wasthrough those efforts that we
were able to get speakers andget.
We ended up finding a dozen ofwhat we call educational
partners, companies likeExceptional Minds or like CLU
Brainstorm Productions, who arefocused on this community and
providing training to them.
So it's interesting to see.
(22:47):
I'm going to say one more thing.
We had over 60 speakers at ourconference, because any time we
brought this up, you know, ourpanels were overflowing and
Marlene, who was the sage inthis industry, said oh, don't
worry about that, people don'tshow up.
The day of Now, we did have oneperson who didn't show up of
(23:10):
those 60 plus, but he ended upconnecting in remotely, so
because there was bad weatherthat day.
So, anyway, that showed you thelevel of passion and importance
that people felt about thisparticular topic.
Speaker 2 (23:28):
It was great to be wrong about that, Judy.
I never enjoyed being wrong, somuch that was awesome.
Speaker 1 (23:38):
Well, that was my question was how you know what
was the general consensus, thefeel, you know, gorgeous venue
and we had huge exhibit spacebut it was a beautiful setting
(24:05):
and we ended up with over 400people attending.
Speaker 3 (24:08):
We had planned for 300 originally, but we were
managed to stretch our budget.
But it was just an amazinglylovely, lovely day.
We had keynote speaker.
Our first keynote speaker wasJorge Gutierrez, who is a
well-known animator who happensto have autism, and he gave the
(24:31):
most inspiring speech.
We had speakers Scott Steindorfwas there, astra was there and
she interviewed Danny Bowman andanother person on the spectrum,
alex Estrella, who runs BlueStar Productions.
So our morning was justoverflowing on a grand stage
(24:53):
with featuring these speakersand then in the afternoon we had
breakout sessions.
It was an amazing day.
People on the spectrum a lot oftime feel broken.
They've been bullied a lot andthey don't know who their
(25:14):
community is, and this day forthem was a day of healing, a day
of joy, a day of reunions.
There was a sense of ohanabecause a lot of these people we
ended up only choosing toinclude people on the spectrum
who had already studied in thisarea, so they were career ready
(25:39):
and they ran into people thatthey had gone to high school
with or they had been in thisprogram with or whatever, and
there was just so much reunitingof people and the networking
was amazing and thecommunication and so many little
conversations have led toamazing um activities since then
(26:03):
.
Marlene can go on and on aboutthis, but but we uh ended up
doing a project with Rob Kuttnerwho offered to be our media
partner.
We found out even aboutrelationships that formed the
(26:42):
guy who we had be our voice ofGod, tyler Berman.
He ended up meeting his loveinterest, mallory at at this
event, uh, we had authentic loveon the spectrum.
I love it on the spectrum theretoo yeah, we had it figuratively
(27:03):
and literally.
Yeah, I love that.
You know, and and as a, whatwas amazing for me was one of
the people that we brought on tothe Autism and Entertainment
work group is Paul Hamstreet.
Paul had been the executivevice president at Warner
Brothers responsible for theadditional DVD content, so
(27:27):
whenever there was a HarryPotter film there was all the
extras and he was responsiblefor the extras.
He led our production, ourvideo production team, so we
recorded the entire conference.
So if anyone is interested,they can watch the entire
conference from our website andhe led a video crew in recording
it.
(27:47):
They also.
He also led the production ofsix different documentaries
about different people on thespectrum who were just having
success in their career.
One is Danny Bowman.
So one of the people on hisproduction team is my son, josh,
who I saw working that wholeday shooting video, and he he
(28:10):
made two documentaries for ourconference and, and it was like
wonderful, a couple of weeks agohe, as I mentioned, he
graduated from Cal state,fullerton.
He had a professor, gwen, whohe's kept in touch with over the
years, and Gwen heard about theconference and she had him come
to his class and talk about theAutism and Entertainment
(28:33):
Conference.
So so many little contacts,little relationships have
blossomed from this, which wasour, you know, was our goal.
So it was an amazing day.
It was amazing that the themesthat we wanted for the day came
out organically.
One of the things was abouthaving superpowers.
(28:56):
You know, we wanted tobasically that strength and
brand that you have for autismand technology.
We wanted people to see thatfor entertainment and these
people and that message abouthaving superpowers.
Scott Steindorf said it bestwhen he said you know, people on
the spectrum think differentlyand thinking differently leads
(29:17):
to innovation, and so that waswonderful.
Another wonderful thing thatcame through was about the
importance of failure.
The importance of failure andthat you know, a lot of people
on the autism spectrum haveanxiety and a lot of them are
perfectionists and they just arescared to do anything because
they're scared to fail.
And that theme of importance ofallowing yourself to fail and
(29:43):
how failing is part of theprocess of learning was
reinforced humorously by JorgeGutierrez, who every story he
told ended with and then theycanceled it.
You know all the differentfailures, but how he never let
that be a problem.
He basically took that and saidI have learned, I have grown,
(30:07):
and now I'm going to take thisand apply it somewhere else.
I have learned, I have grown,and now I'm going to take this
and apply it somewhere else.
And he reinforced that, dannyBowman reinforced that, alex
Estrella reinforced it, and sothere was.
You felt that that message ofdon't allow fear of failure to
be a barrier to success, to be abarrier to success.
(30:32):
So it was just amazing to mehow these themes just became
interwoven throughout the dayand reinforced this really
positive day.
One last thing was there wasjust so much interacting going
on, and there's so many storiesof little conversations with
Jorge or conversations withbetween two people that ended up
(30:54):
leading to something else.
And so it's.
It was an amazing day that it.
It was like a, an art.
It's an orchard that keeps ondelivering more and more fruit,
and so, um, it's a blessing thatthat that that that was such an
important day for so manypeople.
Speaker 1 (31:18):
Excuse me.
Yeah, I can completely agreeand understand only because I
didn't tell you this earlier.
But I've also had virtualevents I started.
My first one was in 2022,called the one in 44 tour, and
then I did kind of like a playon the numbers the one in 36 mix
(31:40):
we had an international autismsummit, safety summit, and then
we did another one in 36 mixeslast year.
But the same thing theopportunities we usually have 22
to 44 speakers about.
You know two days worth of ittoo, but I can't wait to do
something in person, to reallyget, bring everyone together, to
(32:02):
see all the smiles in one placetogether and not just virtually
.
It's wonderful on virtually,but, yeah, to see it in person.
I can imagine this just be soamazing and the messages that
you can get and I'm so glad thatthe community in general just
really sound like they supportedyou so much in putting this
together and bringing it tofruition.
(32:24):
Let's talk a little bit beforewe run out of time, some of the
other programs and things thatyou're working on right now.
Speaker 3 (32:34):
Sure.
So I should mention that.
The beginning of my journey,you know, not counting being a
mother but when my son was 18,he did a program called Peers,
which is a UCLA based socialskills program, and during that
(32:55):
they encouraged you to joinclubs.
And I had the idea of becauseat the time I was starting a
Toastmasters group at my companyabout wouldn't Toastmasters be
the right club for somebody onthe autism spectrum to join?
And so it's been my life's work.
For the last dozen or so yearsI have been working with autism
(33:18):
and Toastmasters.
I run a monthly gavel clubwhere there are 20 or so
participants who give speechesand have had personal growth.
And while I was running thisconference I was also working on
a government grant that well,not a government grant, a grant
(33:40):
from the Organization for AutismResearch for a couple faculty
members, sasha Zedek and YasminValerian, who were doing a study
on the effectiveness ofToastmasters for individuals on
the spectrum, and so I'm reallyexcited there.
I ran two workshops for them tomeasure them, before and after.
(34:01):
They interviewed a number ofpeople on the spectrum, people
on the spectrum including TomIsland, who had had done
Toastmasters and were dealingwith autism and the benefits
they saw, and so what's going tobe great is, in the next year
(34:22):
or so, there'll be severalarticles that will be published
about the benefits ofToastmasters for individuals on
the spectrum, and it's such anaccessible way of improving your
communication skills, ofmeeting people, socializing,
(34:43):
that I'm really excited aboutthat.
So that's one area of focusthat I continue to do as part of
the Orange County Asperger'ssupport group.
I mentioned that my involvementhas led to being involved in
employment related initiativeswhen I, when I did retire from
my career, I joined a groupcalled the Orange County Local
(35:07):
Partnership Agreement, which isan organization in Orange County
that includes schools, so itincludes high schools, includes
colleges, it includes Departmentof Rehab Regional Center, which
, in California, is anorganization that supports
individuals with disabilities,so it has this footprint of a
(35:28):
and non and nonprofits and avariety of organizations, and so
I have been running a groupfocused on benefits, so it's a
benefits planning group.
The years and my son hadreceived SSDI is that people
(35:52):
were afraid of losing theirbenefits if they worked, and so
what was happening is a lot ofthese people who were there's
hundreds of thousands of peopleworking on trying to help people
with disabilities findemployment and one of the
(36:17):
problems they have is that theperson isn't eager to find an
employment or their parent isconcerned about them working
because their hard-fought safetynet, which is bringing in you
know, maybe nine hundred dollarsmonth, they could risk losing
that and losing their healthinsurance if they made too much
(36:37):
money or if they didn't managethis appropriately.
And so I ran a group to reallylook at this and try to work
with Social Security on fixingthe underlying problems, and
just finished analyzing a surveythat was responded to by over
600 individuals withdisabilities that showed that
(37:04):
two-thirds of them were fearfulof losing their benefits if they
work and so that fear wascausing them was impacting their
decision.
With a significant portion ofthat over half of that group it
was significantly impactingtheir decision.
(37:24):
But what was scary was that ofthe 600 people, 40% had either
worked or were currently working.
It was about 50-50.
Of that group, 75% had problemswith Social Security.
These weren't short-termproblems.
(37:44):
These were problems lastingmonths, years to resolve if they
got resolved, years to resolveif they got resolved, and the
problems they received, theimpact to them, were many.
Over 70% received overpaymentnotices.
These are notices that say wethink we paid you too much money
(38:16):
.
Send us that money back andknow.
It's like if you checked andand these are for long periods
of time, so they can be tens ofthousands of dollars, and it's
because they only review yourfile every so often and then
they go back and say oh, we madea mistake 10 years ago.
You, us all, owe us all themoney that we've given you for
the last 10 years.
It would be like if you checkedout a library book when you're
a kindergarten and they didn'ttell you you were overdue till
you graduated, and then they sayyou can actually build a whole
(38:40):
new library for us, thank you.
You know that's the kind ofimpact.
But you know, 40% lost theirbenefit.
40% lost their benefit, asignificant loss their health
insurance, and many like 10%were told you're no longer
disabled.
The reason is they equate beingdisabled with the ability to
(39:03):
work, and so if you worked somuch, now you're no longer
disabled.
So then it kind of makes a lotof things confusing about.
Well, can you get back onSocial Security if they're
saying you're no longer disabled?
So then it kind of makes a lotof things confusing about.
Well, can you get back on socialsecurity if they're saying
you're no longer disabled, andit ignores the fact that a lot
of times these jobs areopportunistic.
(39:25):
They're like somebody decidesyou know you've got a paid
internship and you can do it, orsomebody, there's a special
person that works at thiscompany, that brings you on
there they're your aunt or afriend of the family and then
they leave the company and nowyou don't have a job.
Or your mom dies and now all ofa sudden you're an emotional
wreck and and that mental healthissue gets in the way.
(39:48):
So anyway, this is a.
This is a big deal that needsto be what is social security is
general.
Speaker 1 (39:56):
You know what are.
Are they're going to supportyou or are they going to work
with you, or have they?
Oh, I mean, what's been theirresponse?
Yeah, what has been there?
Speaker 3 (40:05):
I really haven't had enough.
I've had some peripheraldiscussion with them, but not
the meaningful discussion.
I only finished doing theanalysis of this in the last
month or two.
But they're underfunded andlike we put together a paper
(40:25):
with 64 different things thatthey could do to fix it and the
top nine so we can have in yoursite a link to the infographic
that we have and things likethat that have that.
But some of them are justsimple little software tweaks.
You know, my background issoftware and I think, god, this
(40:46):
is a summer intern work.
This is not a huge amount ofwork.
But they say, oh, we have a lotof things on our list, or we
don't have the money, or wedon't have this or that.
You know it's kind of likeyou're flushing money away on
the wrong things.
You're flushing money away onthe wrong things and if you, if
(41:12):
you're, you're putting yourmoney into treating the problem
versus not having the problem.
And and so there was a longperiod of time where there was a
lack of leadership in socialsecurity.
But I haven't really doneenough yet to have had although
I'm working across the state ofCalifornia and I'm working with
a lot of senior people wehaven't.
We kind of came out with theanswers during the period of
(41:35):
time when we were in the middleof an election, and so I've kind
of been waiting for thatelection to settle down and
figure out what's the beststrategy moving forward.
Speaker 1 (41:49):
Thank you for your work in that that's.
I mean, my son also receivessocial security and, yeah, that
is something we're going to haveto consider someday and if we,
you know, we thought aboutgetting trusts and things like
that.
So definitely some, some thingswe have to consider.
It has been so lovely to haveyou both on today to get to know
(42:11):
you better, and I hope that wecan remain close and and stay in
touch in the future, because Ithink that we have so many
similarities in what we'reworking with, our main goal to
be really real, for you know,that's, that's what it is, and I
want to make sure that we getthe information.
Is this correct?
(42:32):
Orange County Asperger'ssupport group.
Speaker 3 (42:35):
Yeah, and you just need the apostrophe there and
I'll put.
Speaker 1 (42:38):
Yes and I'll.
I'll fix that when I get itreally into the in the show
notes autism entertainment.
Make sure that you make go andand any other websites or any
sites you'd like people to goand visit.
Speaker 3 (42:53):
Yeah, I'm putting.
I'm giving you the autism andentertainment.
Orange County Asperger'ssupport group website.
We have social media sites,linktree, we've got a linktree.
Speaker 2 (43:07):
We've got a merch site.
Now we're doing e-commerce forautism and entertainment, so you
can get cool stuff like this.
Oh, I love it.
I love that Our design by JorgeGutierrez.
He donated this design based onthe original design by Jimmy
(43:33):
Bordeaux, and so we have twodifferent official logos and
merch to match all of them.
Speaker 1 (43:44):
Oh, I love that.
Speaker 3 (43:45):
I'm trying to get you the link tree as well, which
has the social securityinformation, has the infographic
and the white paper, andthere's even a petition you can
sign if you're concerned aboutthis, so share that with your
(44:11):
audience.
Sarah, you're wonderful.
Thank you so much for meetingwith Colleen and me today.
We really enjoyed it.
Speaker 1 (44:19):
Oh, me too.
Thank you, judy.
It's such a pleasure and I hopethat we can, you know, have
some fun in the future.
And please know that there's anopen invitation for my next
event, which will be in April,for you guys to be a part of it,
as, whatever that may be, Iwould love to have you be a part
of it.
Of course, I'm waiting for thenew numbers to come out from the
(44:40):
CDC before I make my excitingwhat the name of the show is
going to be.
Speaker 3 (44:46):
When are those?
Speaker 1 (44:47):
supposed to come out again, Sarah?
Do you know 2025.
Just right around the corner.
That'll be interesting to see,which we know that won't
possibly be totally correctbecause there's so many that are
just undiagnosed.
Speaker 3 (45:03):
You know the problem.
I did some analysis of this onetime and the data that they
report is basically four yearsold when they report it.
So it's already old when theyreport it and it's based on
people being diagnosed by ageeight.
Yeah, so you're already missingout on all the late diagnosed
(45:26):
people.
So you just know that it reallyis underrepresenting, because
my guess is that at leastanother third of people get
diagnosed after the age of eight.
So you just know of this numberthat you're going to be sharing
(45:50):
, or that they will be sharing,is going to be really
under-representing the trueimpact of of autism.
Speaker 1 (45:54):
Yeah, yeah, a hundred percent.
I think that's part of thereason we do it is to really
show that, even though this iswhat you know, it may be telling
you, you have to look deeper toto see the truth and and really
, um, but being a part of thecommunity and I have heard this
in the last month a few times islike, uh, the last secret, you
(46:18):
know beautiful place of Atlantisor something that is just like
this amazing place that um is isunknown for so many people
around the world.
But we're trying to reallybring it forth so that people
can join us and have theseamazing opportunities and go to
our amazing events, so that youcan create these relationships
(46:40):
and really just happiness andsuccess for you in the future.
So thank you so much for beinghere.
It's such a pleasure.
Thank you, Sarah, and I reallycan't wait to stay in touch and
make sure you guys let me knowwhen you have things coming up
in the future so that we can bedoing some cross promoting for
(47:00):
each other for sure, we willThank you so much, sarah.
Speaker 2 (47:04):
Thank you, see you later, marlene Bye Bye, jimmy
Bye Sarah.
The SJ Child Show is Backford's 13th season.
Join Sarah Bradford and the SJChild Show team as they explore
the world of autism and sharestories of hope and inspiration.
This season we're excited tobring you more autism summits
featuring experts and advocatesfrom around the world.
(00:20):
Go to sjchildsorg to donate andto get more information.
Congratulations on 2024's20,000 downloads and 300
episodes.
Hi and welcome to the SJ Childsshow today.
I'm so honored to be meetingwith Marlene and Judy and they
(00:43):
are coming from the same areabut we're going to be talking a
little bit about some projectsthat they both work on or they
may be working on separately andreally just kind of uncover why
they are amazing, wonderfulguests today.
So, without further ado, let'shave an introduction.
(01:03):
I have met with Marlene andwe've been able to talk and get
to know one another.
This is my first time gettingto know Judy and I'm really
honored to spend this time inthis space with them to really
uncover the services thatthey're providing in the autism
(01:24):
community and just really forthe community when they're
providing in the autismcommunity and just really for
the community when we look at itin general.
So, yeah, let's start with that.
Marlene, please give us anintroduction and let us know a
little bit about yourself.
Speaker 2 (01:38):
Well, I'm going to start out by introducing Judy,
because without Judy I wouldn'tbe here.
So Judy is the founder ofAutism and Entertainment and
she's also the president ofOrange County Asperger Support
Group, and I am privileged towork with Judy on both of those
(02:01):
endeavors.
And I live in Los Angeles,judy's in Orange County, so
we're neighbors by about 50 to75 miles of a buffer in between.
But we work on a lot ofprojects together and I'll turn
it over to Judy to give morecolor and history to our
(02:23):
collaboration, more color andhistory to our collaboration.
Speaker 3 (02:26):
Wonderful.
Okay, marlene, you got tointroduce yourself as well, so I
guess what Marlene brought upis that I run Orange County
Asperger's support group andautism in entertainment and
(02:49):
autism in entertainment.
Just a little personalbackground is I'm the mother of
a 33-year-old son withhigh-functioning autism, which
is where my focus in thiscommunity comes from, and my
background is I have had acareer as an executive in
high-tech marketing andeducational background from UCLA
(03:15):
in computer science andCarnegie Mellon in business
administration, and I think thatgives me the skill set that
enables me to get things done,which I think has been critical
in helping the community inSouthern California move forward
(03:37):
on a lot of different frontsrelated to the challenges that
families have as they try andimprove their quality of life
when dealing with some of thechallenges of autism.
Speaker 1 (03:52):
I love that.
Thank you so much for your workand for being here and for
bringing Marlene along on thisjourney with us.
Yeah, it's, it's incredible,and the friends and community
that I have found ininterviewing and working with so
(04:14):
many people throughout thespectrums related opportunities,
if you will has just reallyshowed me the closeness that we
all can find in one another,with our community, and that's
why we love to do shows likethis to highlight all of the
(04:36):
opportunities and services thatare out there.
The resources so we have somereally great resources and
things to talk about today forsure.
So, marlene, now we get to getyour little introduction, or big
introduction.
Speaker 2 (04:54):
Okay, well, I am a producer, writer, creative
executive who's relatively newto autism.
As a cause and part of mycareer, I started with a
non-profit called Center forLearning Unlimited about four
(05:17):
and a half years ago.
I was brought on through afriend of mine who's teaching
there, a friend from animation.
She was teaching and sheenlisted me as a consultant for
an animation program for adultson the spectrum to learn
fundamentals of animation aspotential career path, and so my
(05:39):
background is very heavy inanimation and merchandise-driven
entertainment A lot of the nerdbrands that your viewers
probably have heard of, such asSonic, the Hedgehog and Yo-Kai
Watch and Power Rangers, a lotof boys' action brands, and so
the Center for LearningUnlimited training program
(06:01):
seemed to be at a place in theirdevelopment where they needed
an entertainment industryliaison to bridge the gap
between the education that thestudents were receiving and then
transferring into the realworld when they graduated from
this three-year program.
So I was working as a consultantfor Center for Learning
(06:24):
Unlimited, as well as BrainstormProductions, which is the four
hire studio that we started forthe graduates of CLU and through
a grant program.
That's how Judy and I becameacquainted, became acquainted,
(06:50):
so Brainstorm and CLU received agrant from the California
Department of DevelopmentalServices and Judy, through
Orange County Asperger's SupportGroup, received a similar grant
, also from the DDS, and we wereintroduced through a couple of
different avenues.
We were running in the samecircle, so we were bound to meet
at some point in time and Judywas already underway with
(07:14):
preparations for the firstconference, which took place on
April 5th, and I invited myselfto join and never left here I am
the end, I love it.
Speaker 1 (07:26):
Invited myself to join and never left.
And, you know, let's bring thatconference up because that was
the basically the first time Ihad an introduction to autism
and entertainment through ourmutual friend, harry James
O'Kelly.
Love you so much, harry, andyou know, I not only saw that
(07:47):
she was there, but Danny Bowmanand Shannon Penrod and all of my
friends that were there, and Iwas like, oh my gosh, you know,
zara Astra and Scott Steindorf,and some of some people that I
just love and adore.
And then I've had, you know,had on the podcast and in so
many events in the past, and Isaid to myself I should be at
(08:07):
this conference right now withall of my friends here.
But, yeah, so it was just Ihave to get to know what's going
on here.
And then, of course, harry,doing the wonderful thing she
does, you know, sent me 10back-to-back text messages with
all of your names and how to getahold of you and and all of
that.
And so that's where I startedto to really, you know, look in
(08:31):
and see, oh my gosh, this issomething.
Not only that, it's so importantand so necessary for
representation and it also isoffering opportunities for
adults on the autism spectrum,and that's really necessary for
families to understand that.
(08:52):
You know your child doesn'thave to grow up and not get a
job or work at the grocery storeas a bagger, and that's the
only type of employment they canreceive.
You know what are theirpassions, what are their loves,
what do you find them doingevery day, all day?
Excuse me and follow that andreally push those dreams and
(09:17):
those strengths.
And there are some bigopportunities out in the world
for those types of individuals.
Judy, what kind of what droveyou, or what maybe your son's
interests, to really pursue thisin the entertainment or just in
all of it?
Speaker 3 (09:36):
Sure, let me just kind of take a couple steps back
and say that when I becamepresident of the Orange County
Asperger's Support Group as amarketing person, which I
mentioned I was the first thingI did was a survey, and from
that survey the thing that cameout which I was surprised about
because my son was not out inthe working world, but that was
(10:02):
the number one issue wasemployment of our membership,
and over the course of time Ifocused a lot of energy on
employment and autism, learningthat between 80 and 85% of the
autistic community adults wereunemployed or underemployed, and
so working on trying to improveemployment became a passion for
(10:28):
me and I did a variety ofthings in that area.
I ran something called CareerClub that was focused on adults
who had graduated from collegebut needed to start their
journey, finding employment.
So that was very top of mind.
And again, as a marketingperson, I saw that the strategy
(10:52):
that was being used by a lot oforganizations was very
horizontal.
So we need to create jobsversus.
We need to create jobs inhealthcare, we need to create
jobs in law, we need to createjobs in technology, and so I
thought I was seeing success forthe higher functioning autistic
(11:16):
community In which I know canbe a sensitive term, but in the
technology space.
So there was an organizationcalled.
It was founded by microsoft andand companies like dell and hp,
hp and sap have all been eagerto employ neurodivergent
(11:41):
individuals in theirorganization and they created
the Autism at Work roundtable,which now I think is called
Neurodiversity at Work to createemployment opportunities for
individuals on the autismspectrum.
And so many leaders in that techspace are people on the
spectrum, such as Bill Gates orSteve Jobs.
(12:05):
So there have been, you know, avariety of folks who maybe
because of just some of thecharacteristics of people on the
spectrum, were very talented inthe tech space.
So I saw that and when my songraduated from college, from Cal
(12:26):
State, fullerton, with a degreein television and film, I
started realizing how manypeople in the entertainment
space that were drawing peoplewith autism to that space, who
had a passionate interest invideo games, a passionate
(12:48):
interest in animation, and Ithought, well, maybe what we
should do is take an approachthat was vertical and just focus
in on the entertainment spaceand try and expand employment
for individuals on the spectrumin that space.
So that was my initial conceptand the way I thought about
(13:12):
doing it again pulling from mycareer experience, was in high
tech there are oftentimes thingscalled working groups that are
created and a lot of timesyou'll have coopetition, you'll
have competitors participate inthat, because what they're
trying to do is do someinitiative for the industry.
(13:32):
A lot of time it's standardsrelated.
So I was involved in somestorage standards working groups
and I thought, you know, thatmight be the right model for how
to take this initiative forward, because I felt that it wasn't
going to just be me.
I needed to create this groupof people who could help push
(13:54):
this initiative forward.
And if you ever saw Castaway, Ilove it how Tom Hanks' character
talks about how you just kindof wait and then that sail,
which happened to be aport-a-potty, shows up on the
island and he finds his way andit becomes a sail.
(14:17):
And so for me, I startedsocializing this idea and found
other people that would beinterested.
And then one day I went into anOCSG meeting it was a virtual
support meeting and a womannamed Patricia Turney showed up
and she introduced herself andshe said that she happened to be
(14:38):
the chair of the Board ofExceptional Minds, that she
happened to be the chair of theboard of exceptional minds and I
said, ah, I had heard aboutexceptional minds but I didn't
know anyone in exceptional minds.
So I talked to Patricia and sowe started working on launching
this work group and and webrought in a company called
(14:59):
Zavacon, who had been my partneron Career Club and they had
both had experience in theentertainment space.
So I thought they're jobdevelopers in the entertainment
space.
And there were people I met atD&D games Dungeons and Dragons
games and different people who Ibrought in and said, hey, you
(15:19):
want to help us try and makesomething happen.
And so in May of 2022, we hadour first meeting of the Autism
and Entertainment Work Group andthat was the starting point for
the idea of the work group.
Probably I should breathe and Ican explain the conference in a
(15:44):
few minutes, but kind of letyou process all that.
Speaker 1 (15:51):
I love those approaches that you took too.
It's really fascinating to hearyour mindset and the way you
really played it out and how you, you know, put in different
models or different ideas of howyou were going to create it,
which is wonderful for mebecause I'm just starting a
nonprofit and I feel like thebaby is baby infant.
(16:11):
I don't know what I'm doing,but I need these ideas, you know
, I need to know what might workand what might not, and and so
it's great for for learning inall types of ways.
But, yeah, just fascinating tohear those, those steps that you
took, marlene, what, how didyou, when did you kind of find
(16:32):
your way in and what did thatlook like?
I was late to the party.
Speaker 2 (16:36):
I didn't come in until summer 2023-ish around
that time and that was due tothe when I was working with
Brainstorm and CLU.
We were and my dog is verypassionate on this.
(16:58):
She loves to talk about originstories, so you might hear her
like a Greek chorus in the back.
But there you go.
But our program at CLU,brainstorm, was getting underway
, so our grant from DDS wasrelated to research on remote
(17:23):
job coaching, and so we werestarting in earnest at that
point in time.
And then the head of Bra aboutJudy and what she was doing with
the conference, because we hadsimilar grants.
(17:44):
But then David Siegel said, oh,you should really get to know
Judy Utah because she's puttingtogether the autism and
entertainment conference.
So I thought, okay, to to to.
Very noteworthy sources havetold me to go to Judy, so I will
do that today.
And then that's what I did.
(18:05):
And so Judy allowed me to go toone of the planning meetings,
the virtual planning meetings,and that's how it started.
And I asked some questionsbecause I am a nosy, busy body,
and so I had a million questionsand I was jumping out of my
seat because it just all soundedso exciting and I couldn't wait
(18:28):
to contribute in some way.
So I asked a number of rapidfire questions about the plans
for our press release and socialmedia and all kinds of things
that are pretty standard in thebusiness of shameless promotion
that I am in, which is alsomeant to sell toys to children.
(18:49):
So everything's all about theeyeballs and how many people you
can get to hear your message sothey'll run out and buy video
games and toys, and so this is aJudy's is a group of benevolent
human beings who are all aboutthe message and not as much
(19:09):
about getting the message out.
Yeah, shameless self promotion,which is where I came in, and
so I became the mouthpiece forthe organization in the sense
that I was handling sponsorshipsand PR and then continued on
(19:31):
with community outreach andthings of that nature.
Speaker 3 (19:35):
So I just want to kind of yeah, let me kind of
work back a little bit.
Yeah, let me kind of work backa little bit.
So in November in May of 2022,we had our first meeting.
We decided we wanted to have aconference.
That summer we found out about,one of which was our conference
.
The other was the CLU projectabout remote job coaching, and
(20:10):
so we applied for the grant andgot the grant, marlene and I,
when there were about 50 or soorganizations who got these
grants, about 50 or soorganizations who got these
grants, and DDS did a reallyphenomenal job of holding
quarterly meetings with thesedifferent teams and featuring
different groups.
And so that's where I heardJenny from CLU speak and I was
(20:36):
like picking out.
There were maybe three or fourdifferent grants where the
individual involved had someentertainment related connection
, and so, anytime, I wasstarting from ground zero.
When I got started with thiscommunity, I didn't really know.
You know, I had relatives inthe industry, but that was about
(20:57):
it.
I had relatives in the industry, but that was about it.
And so there were just thesebreadcrumbs that kept on
dropping and I would just followthem.
And so, whether that wasreaching out to CLU and Jenny,
or when Marlene showed up, itwas another gift Because I knew
(21:18):
that we you know, I'm amarketing person I knew we
needed to do PR, but I didn'tknow who was going to do it and
I had budgets set aside to do it.
And then Marlene shows up and Isaid, okay, this is the person
that's going to be doing this,and she had.
When we started, we didn't knowwho was going to come to the
conference.
We were putting on a conferencefor 400 people, but we didn't
(21:44):
know who was going to be there,who was going to speak, who was
going to do anything, and so wewere having to create this all
from nothing.
And it was really an example ofhow important networking and
promotion is, because it wasthrough.
You know, I saw that Marlenehad thousands and tens of
thousands of followers and Ithought, well, once she starts
(22:05):
talking about this, people aregoing to find us, and we now
have a database of over 1,600people.
And we had more.
We were turning people away forthe conference because we didn't
have enough space away for theconference because we didn't
(22:25):
have enough space, and so it wasthrough those efforts that we
were able to get speakers andget.
We ended up finding a dozen ofwhat we call educational
partners, companies likeExceptional Minds or like CLU
Brainstorm Productions, who arefocused on this community and
providing training to them.
So it's interesting to see.
(22:47):
I'm going to say one more thing.
We had over 60 speakers at ourconference, because any time we
brought this up, you know, ourpanels were overflowing and
Marlene, who was the sage inthis industry, said oh, don't
worry about that, people don'tshow up.
The day of Now, we did have oneperson who didn't show up of
(23:10):
those 60 plus, but he ended upconnecting in remotely, so
because there was bad weatherthat day.
So, anyway, that showed you thelevel of passion and importance
that people felt about thisparticular topic.
Speaker 2 (23:28):
It was great to be wrong about that, Judy.
I never enjoyed being wrong, somuch that was awesome.
Speaker 1 (23:38):
Well, that was my question was how you know what
was the general consensus, thefeel, you know, gorgeous venue
and we had huge exhibit spacebut it was a beautiful setting
(24:05):
and we ended up with over 400people attending.
Speaker 3 (24:08):
We had planned for 300 originally, but we were
managed to stretch our budget.
But it was just an amazinglylovely, lovely day.
We had keynote speaker.
Our first keynote speaker wasJorge Gutierrez, who is a
well-known animator who happensto have autism, and he gave the
(24:31):
most inspiring speech.
We had speakers Scott Steindorfwas there, astra was there and
she interviewed Danny Bowman andanother person on the spectrum,
alex Estrella, who runs BlueStar Productions.
So our morning was justoverflowing on a grand stage
(24:53):
with featuring these speakersand then in the afternoon we had
breakout sessions.
It was an amazing day.
People on the spectrum a lot oftime feel broken.
They've been bullied a lot andthey don't know who their
(25:14):
community is, and this day forthem was a day of healing, a day
of joy, a day of reunions.
There was a sense of ohanabecause a lot of these people we
ended up only choosing toinclude people on the spectrum
who had already studied in thisarea, so they were career ready
(25:39):
and they ran into people thatthey had gone to high school
with or they had been in thisprogram with or whatever, and
there was just so much reunitingof people and the networking
was amazing and thecommunication and so many little
conversations have led toamazing um activities since then
(26:03):
.
Marlene can go on and on aboutthis, but but we uh ended up
doing a project with Rob Kuttnerwho offered to be our media
partner.
We found out even aboutrelationships that formed the
(26:42):
guy who we had be our voice ofGod, tyler Berman.
He ended up meeting his loveinterest, mallory at at this
event, uh, we had authentic loveon the spectrum.
I love it on the spectrum theretoo yeah, we had it figuratively
(27:03):
and literally.
Yeah, I love that.
You know, and and as a, whatwas amazing for me was one of
the people that we brought on tothe Autism and Entertainment
work group is Paul Hamstreet.
Paul had been the executivevice president at Warner
Brothers responsible for theadditional DVD content, so
(27:27):
whenever there was a HarryPotter film there was all the
extras and he was responsiblefor the extras.
He led our production, ourvideo production team, so we
recorded the entire conference.
So if anyone is interested,they can watch the entire
conference from our website andhe led a video crew in recording
it.
(27:47):
They also.
He also led the production ofsix different documentaries
about different people on thespectrum who were just having
success in their career.
One is Danny Bowman.
So one of the people on hisproduction team is my son, josh,
who I saw working that wholeday shooting video, and he he
(28:10):
made two documentaries for ourconference and, and it was like
wonderful, a couple of weeks agohe, as I mentioned, he
graduated from Cal state,fullerton.
He had a professor, gwen, whohe's kept in touch with over the
years, and Gwen heard about theconference and she had him come
to his class and talk about theAutism and Entertainment
(28:33):
Conference.
So so many little contacts,little relationships have
blossomed from this, which wasour, you know, was our goal.
So it was an amazing day.
It was amazing that the themesthat we wanted for the day came
out organically.
One of the things was abouthaving superpowers.
(28:56):
You know, we wanted tobasically that strength and
brand that you have for autismand technology.
We wanted people to see thatfor entertainment and these
people and that message abouthaving superpowers.
Scott Steindorf said it bestwhen he said you know, people on
the spectrum think differentlyand thinking differently leads
(29:17):
to innovation, and so that waswonderful.
Another wonderful thing thatcame through was about the
importance of failure.
The importance of failure andthat you know, a lot of people
on the autism spectrum haveanxiety and a lot of them are
perfectionists and they just arescared to do anything because
they're scared to fail.
And that theme of importance ofallowing yourself to fail and
(29:43):
how failing is part of theprocess of learning was
reinforced humorously by JorgeGutierrez, who every story he
told ended with and then theycanceled it.
You know all the differentfailures, but how he never let
that be a problem.
He basically took that and saidI have learned, I have grown,
(30:07):
and now I'm going to take thisand apply it somewhere else.
I have learned, I have grown,and now I'm going to take this
and apply it somewhere else.
And he reinforced that, dannyBowman reinforced that, alex
Estrella reinforced it, and sothere was.
You felt that that message ofdon't allow fear of failure to
be a barrier to success, to be abarrier to success.
(30:32):
So it was just amazing to mehow these themes just became
interwoven throughout the dayand reinforced this really
positive day.
One last thing was there wasjust so much interacting going
on, and there's so many storiesof little conversations with
Jorge or conversations withbetween two people that ended up
(30:54):
leading to something else.
And so it's.
It was an amazing day that it.
It was like a, an art.
It's an orchard that keeps ondelivering more and more fruit,
and so, um, it's a blessing thatthat that that that was such an
important day for so manypeople.
Speaker 1 (31:18):
Excuse me.
Yeah, I can completely agreeand understand only because I
didn't tell you this earlier.
But I've also had virtualevents I started.
My first one was in 2022,called the one in 44 tour, and
then I did kind of like a playon the numbers the one in 36 mix
(31:40):
we had an international autismsummit, safety summit, and then
we did another one in 36 mixeslast year.
But the same thing theopportunities we usually have 22
to 44 speakers about.
You know two days worth of ittoo, but I can't wait to do
something in person, to reallyget, bring everyone together, to
(32:02):
see all the smiles in one placetogether and not just virtually
.
It's wonderful on virtually,but, yeah, to see it in person.
I can imagine this just be soamazing and the messages that
you can get and I'm so glad thatthe community in general just
really sound like they supportedyou so much in putting this
together and bringing it tofruition.
(32:24):
Let's talk a little bit beforewe run out of time, some of the
other programs and things thatyou're working on right now.
Speaker 3 (32:34):
Sure.
So I should mention that.
The beginning of my journey,you know, not counting being a
mother but when my son was 18,he did a program called Peers,
which is a UCLA based socialskills program, and during that
(32:55):
they encouraged you to joinclubs.
And I had the idea of becauseat the time I was starting a
Toastmasters group at my companyabout wouldn't Toastmasters be
the right club for somebody onthe autism spectrum to join?
And so it's been my life's work.
For the last dozen or so yearsI have been working with autism
(33:18):
and Toastmasters.
I run a monthly gavel clubwhere there are 20 or so
participants who give speechesand have had personal growth.
And while I was running thisconference I was also working on
a government grant that well,not a government grant, a grant
(33:40):
from the Organization for AutismResearch for a couple faculty
members, sasha Zedek and YasminValerian, who were doing a study
on the effectiveness ofToastmasters for individuals on
the spectrum, and so I'm reallyexcited there.
I ran two workshops for them tomeasure them, before and after.
(34:01):
They interviewed a number ofpeople on the spectrum, people
on the spectrum including TomIsland, who had had done
Toastmasters and were dealingwith autism and the benefits
they saw, and so what's going tobe great is, in the next year
(34:22):
or so, there'll be severalarticles that will be published
about the benefits ofToastmasters for individuals on
the spectrum, and it's such anaccessible way of improving your
communication skills, ofmeeting people, socializing,
(34:43):
that I'm really excited aboutthat.
So that's one area of focusthat I continue to do as part of
the Orange County Asperger'ssupport group.
I mentioned that my involvementhas led to being involved in
employment related initiativeswhen I, when I did retire from
my career, I joined a groupcalled the Orange County Local
(35:07):
Partnership Agreement, which isan organization in Orange County
that includes schools, so itincludes high schools, includes
colleges, it includes Departmentof Rehab Regional Center, which
, in California, is anorganization that supports
individuals with disabilities,so it has this footprint of a
(35:28):
and non and nonprofits and avariety of organizations, and so
I have been running a groupfocused on benefits, so it's a
benefits planning group.
The years and my son hadreceived SSDI is that people
(35:52):
were afraid of losing theirbenefits if they worked, and so
what was happening is a lot ofthese people who were there's
hundreds of thousands of peopleworking on trying to help people
with disabilities findemployment and one of the
(36:17):
problems they have is that theperson isn't eager to find an
employment or their parent isconcerned about them working
because their hard-fought safetynet, which is bringing in you
know, maybe nine hundred dollarsmonth, they could risk losing
that and losing their healthinsurance if they made too much
(36:37):
money or if they didn't managethis appropriately.
And so I ran a group to reallylook at this and try to work
with Social Security on fixingthe underlying problems, and
just finished analyzing a surveythat was responded to by over
600 individuals withdisabilities that showed that
(37:04):
two-thirds of them were fearfulof losing their benefits if they
work and so that fear wascausing them was impacting their
decision.
With a significant portion ofthat over half of that group it
was significantly impactingtheir decision.
(37:24):
But what was scary was that ofthe 600 people, 40% had either
worked or were currently working.
It was about 50-50.
Of that group, 75% had problemswith Social Security.
These weren't short-termproblems.
(37:44):
These were problems lastingmonths, years to resolve if they
got resolved, years to resolveif they got resolved, and the
problems they received, theimpact to them, were many.
Over 70% received overpaymentnotices.
These are notices that say wethink we paid you too much money
(38:16):
.
Send us that money back andknow.
It's like if you checked andand these are for long periods
of time, so they can be tens ofthousands of dollars, and it's
because they only review yourfile every so often and then
they go back and say oh, we madea mistake 10 years ago.
You, us all, owe us all themoney that we've given you for
the last 10 years.
It would be like if you checkedout a library book when you're
a kindergarten and they didn'ttell you you were overdue till
you graduated, and then they sayyou can actually build a whole
(38:40):
new library for us, thank you.
You know that's the kind ofimpact.
But you know, 40% lost theirbenefit.
40% lost their benefit, asignificant loss their health
insurance, and many like 10%were told you're no longer
disabled.
The reason is they equate beingdisabled with the ability to
(39:03):
work, and so if you worked somuch, now you're no longer
disabled.
So then it kind of makes a lotof things confusing about.
Well, can you get back onSocial Security if they're
saying you're no longer disabled?
So then it kind of makes a lotof things confusing about.
Well, can you get back on socialsecurity if they're saying
you're no longer disabled, andit ignores the fact that a lot
of times these jobs areopportunistic.
(39:25):
They're like somebody decidesyou know you've got a paid
internship and you can do it, orsomebody, there's a special
person that works at thiscompany, that brings you on
there they're your aunt or afriend of the family and then
they leave the company and nowyou don't have a job.
Or your mom dies and now all ofa sudden you're an emotional
wreck and and that mental healthissue gets in the way.
(39:48):
So anyway, this is a.
This is a big deal that needsto be what is social security is
general.
Speaker 1 (39:56):
You know what are.
Are they're going to supportyou or are they going to work
with you, or have they?
Oh, I mean, what's been theirresponse?
Yeah, what has been there?
Speaker 3 (40:05):
I really haven't had enough.
I've had some peripheraldiscussion with them, but not
the meaningful discussion.
I only finished doing theanalysis of this in the last
month or two.
But they're underfunded andlike we put together a paper
(40:25):
with 64 different things thatthey could do to fix it and the
top nine so we can have in yoursite a link to the infographic
that we have and things likethat that have that.
But some of them are justsimple little software tweaks.
You know, my background issoftware and I think, god, this
(40:46):
is a summer intern work.
This is not a huge amount ofwork.
But they say, oh, we have a lotof things on our list, or we
don't have the money, or wedon't have this or that.
You know it's kind of likeyou're flushing money away on
the wrong things.
You're flushing money away onthe wrong things and if you, if
(41:12):
you're, you're putting yourmoney into treating the problem
versus not having the problem.
And and so there was a longperiod of time where there was a
lack of leadership in socialsecurity.
But I haven't really doneenough yet to have had although
I'm working across the state ofCalifornia and I'm working with
a lot of senior people wehaven't.
We kind of came out with theanswers during the period of
(41:35):
time when we were in the middleof an election, and so I've kind
of been waiting for thatelection to settle down and
figure out what's the beststrategy moving forward.
Speaker 1 (41:49):
Thank you for your work in that that's.
I mean, my son also receivessocial security and, yeah, that
is something we're going to haveto consider someday and if we,
you know, we thought aboutgetting trusts and things like
that.
So definitely some, some thingswe have to consider.
It has been so lovely to haveyou both on today to get to know
(42:11):
you better, and I hope that wecan remain close and and stay in
touch in the future, because Ithink that we have so many
similarities in what we'reworking with, our main goal to
be really real, for you know,that's, that's what it is, and I
want to make sure that we getthe information.
Is this correct?
(42:32):
Orange County Asperger'ssupport group.
Speaker 3 (42:35):
Yeah, and you just need the apostrophe there and
I'll put.
Speaker 1 (42:38):
Yes and I'll.
I'll fix that when I get itreally into the in the show
notes autism entertainment.
Make sure that you make go andand any other websites or any
sites you'd like people to goand visit.
Speaker 3 (42:53):
Yeah, I'm putting.
I'm giving you the autism andentertainment.
Orange County Asperger'ssupport group website.
We have social media sites,linktree, we've got a linktree.
Speaker 2 (43:07):
We've got a merch site.
Now we're doing e-commerce forautism and entertainment, so you
can get cool stuff like this.
Oh, I love it.
I love that Our design by JorgeGutierrez.
He donated this design based onthe original design by Jimmy
(43:33):
Bordeaux, and so we have twodifferent official logos and
merch to match all of them.
Speaker 1 (43:44):
Oh, I love that.
Speaker 3 (43:45):
I'm trying to get you the link tree as well, which
has the social securityinformation, has the infographic
and the white paper, andthere's even a petition you can
sign if you're concerned aboutthis, so share that with your
(44:11):
audience.
Sarah, you're wonderful.
Thank you so much for meetingwith Colleen and me today.
We really enjoyed it.
Speaker 1 (44:19):
Oh, me too.
Thank you, judy.
It's such a pleasure and I hopethat we can, you know, have
some fun in the future.
And please know that there's anopen invitation for my next
event, which will be in April,for you guys to be a part of it,
as, whatever that may be, Iwould love to have you be a part
of it.
Of course, I'm waiting for thenew numbers to come out from the
(44:40):
CDC before I make my excitingwhat the name of the show is
going to be.
Speaker 3 (44:46):
When are those?
Speaker 1 (44:47):
supposed to come out again, Sarah?
Do you know 2025.
Just right around the corner.
That'll be interesting to see,which we know that won't
possibly be totally correctbecause there's so many that are
just undiagnosed.
Speaker 3 (45:03):
You know the problem.
I did some analysis of this onetime and the data that they
report is basically four yearsold when they report it.
So it's already old when theyreport it and it's based on
people being diagnosed by ageeight.
Yeah, so you're already missingout on all the late diagnosed
(45:26):
people.
So you just know that it reallyis underrepresenting, because
my guess is that at leastanother third of people get
diagnosed after the age of eight.
So you just know of this numberthat you're going to be sharing
(45:50):
, or that they will be sharing,is going to be really
under-representing the trueimpact of of autism.
Speaker 1 (45:54):
Yeah, yeah, a hundred percent.
I think that's part of thereason we do it is to really
show that, even though this iswhat you know, it may be telling
you, you have to look deeper toto see the truth and and really
, um, but being a part of thecommunity and I have heard this
in the last month a few times islike, uh, the last secret, you
(46:18):
know beautiful place of Atlantisor something that is just like
this amazing place that um is isunknown for so many people
around the world.
But we're trying to reallybring it forth so that people
can join us and have theseamazing opportunities and go to
our amazing events, so that youcan create these relationships
(46:40):
and really just happiness andsuccess for you in the future.
So thank you so much for beinghere.
It's such a pleasure.
Thank you, Sarah, and I reallycan't wait to stay in touch and
make sure you guys let me knowwhen you have things coming up
in the future so that we can bedoing some cross promoting for
(47:00):
each other for sure, we willThank you so much, sarah.
Speaker 2 (47:04):
Thank you, see you later, marlene Bye Bye, jimmy
Bye Sarah.
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