In this episode, two parent-advocates - each with a child diagnosed with Autism Spectrum Disorder (ASD) - share how ASD shapes communication, safety, and trust, and why lived experience should guide training for police, firefighters, EMTs, and courts. Together with Cheryl Stehle and Jamiel Owens, we explore misread behaviors, practical de-escalation, family preparation, and the need for policy that reduces harm.
When neurodivergent people interact with first responders a single misunderstanding can turn a routine interaction into a crisis. We sit down with two parents whose lived experience with ASD reshaped how they see safety, communication, and trust—and how first responders can, too. Their personal stories and experiences move from early fear about ASD and confusing diagnoses to purposeful advocacy that prioritizes dignity and practical skills.
We unpack what ASD really means in day-to-day life—why one person’s eye contact challenges or stimming are not defiance, and how processing time, clear language, or a written prompt can lower the temperature fast. Jamiel shares how fatherhood and his role at the Center for Autism Research inform an approach that treats difference as a lens, not a deficit. Cheryl explains how AUTT training equips police, firefighters, EMTs, and juvenile probation with field-ready habits: pause to observe, ask neutral questions about communication needs, and look for tools like blue envelopes, ID cards, or a support contact. The message is simple and actionable: just ask, then adjust.
We also talk about preparation within the family especially when domestic violence is present. An autism go-bag with headphones, comfort items, and a communication device can restore predictability during stressful moves or shelter entry. We discuss emergency preparedness practices for people living with ASD such as visiting police stations, seeing emergency response gear up close, and rehearsing traffic-stop steps that can prevent sensory shock and build confidence. Finally, we push for systems change: mandate recurring, lived-experience-led autism training across public safety platforms; create policy that normalizes optional license notations and standardized info kits; and fund community-curated resource hubs that actually meet families where they are.
If this conversation resonates, share it with a caregiver, a first responder, or a policymaker who can put it to work.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_01 (00:00):
The subject matter of this podcast will address
difficult topics with multipleforms of violence and
identity-based discriminationand harassment.
We acknowledge that this contentmay be difficult and have listed
specific content warnings ineach episode description to help
create a positive, safeexperience for all listeners.
SPEAKER_02 (00:20):
In this country, 31 million crimes, 31 million
crimes are reported every year.
That is one every second.
Out of that, every 24 minutes,there is a murder.
Every five minutes, there is arape, every two to five minutes,
there is a sexual assault.
Every nine seconds in thiscountry, a woman is assaulted by
someone who told her that heloved her, by someone who told
(00:41):
her it was her fault, by someonewho tries to tell the rest of us
it's none of our business.
And I am proud to stand heretoday with each of you to call
that perpetrator a liar.
SPEAKER_01 (00:58):
Approximately one in 31 eight-year-olds in the United
States were diagnosed withautism spectrum disorder in
2022, according to the CDC'slatest ADDM Network report.
This marks an increase in one in36 reported in 2020 and 1 in 44
in 2018.
Some sources estimate that about1 in 45 in the United States are
(01:22):
autistic.
Rising prevalence nearlycertainly reflects improved
screening, broader diagnosticcriteria, and greater awareness
rather than solely an actualincrease in ASD incidents.
As it were, people withintellectual or developmental
disabilities often benefit fromspecialized care and support
tailored to their unique needs.
(01:43):
This care can help them livefulfilling lives, improve their
independence, and participatemore fully in their communities,
with the goal being to providerespect, dignity, and
opportunities for growth whileaccommodating challenges they
may face.
To narrow the scope, it iswidely believed that crimes
against individuals withdisabilities are widely
underreported.
As individuals with autismspectrum disorders are generally
(02:05):
taught compliance from a veryyoung age, have difficulty
picking up on social cues, andmay also have intellectual
disabilities.
They can be easy targets forcriminals.
Specifically speaking, whenfirst responders such as police,
firefighters, or paramedicsencounter autistic children,
there are importantconsiderations that must be
(02:25):
embraced to ensure safety,effective communication, and a
positive outcome.
Today's conversation will bewith Jamil Owens and Cheryl
Steele.
Both have autistic children, andwe will discuss the need for
autistic related awareness,advocacy training, and reform.
Jamil Owens is the CEO ofAwesomeness, the Family
Relations Coordinator for theCenter for Autism Research at
(02:47):
Children's Hospital ofPhiladelphia, and has served as
a law enforcement officer, acivil servant, and volunteer
firefighter.
As a father of a 16-year-old boywho is on the autism spectrum,
Mr.
Owens is truly an advocate forhis son Shane and other autism
parents.
He has been through manychallenges and triumphs in his
life as a disabled individualhimself, which has led him to
(03:10):
give back to other men who maybe experiencing the same issues
within their own lives, butwithout someone to speak to
about them.
Cheryl Steele is the founder ofAug, A U T T, which stands for
Autism Toolbox Training, aformer teacher and passionate
advocate who works to bringunderstanding about autism to
people around her.
(03:31):
Ms.
Steele's involvement in bridgingthe gap between individuals with
autism and the law enforcementand first responder communities
stems from a desire to helpothers who may not have time,
ability, or resources to speakout on their own behalf.
She relies heavily on herrelationships with other
advocates as well as members oflaw enforcement community to
(03:52):
share a message of hope,cooperation, and understanding.
Thank you.
It's good to be here.
As our listeners heard in yourbackground and bio, your worlds
intersect in very meaningfulways.
How did the two of you cometogether and meet?
SPEAKER_00 (04:08):
So, outside of my roles working at Children's
Hospital in Philadelphia, andwell before my role there, I
started a successful platformcalled The Awesome Show.
This was back in 2014, really tohelp autism fathers like myself
kind of understand thecomplexities around fatherhood
and what it means to beintentional in the life of their
(04:30):
child and their family.
That went on and still goes ontoday as a podcast and a
successful platform.
And that's how I came about withCheryl's two sons, Zach and
Josh, is because I was puttingvarious posts out looking and
searching for guests to be onthe show.
And Cheryl seen one of my postsand responded in a very
(04:54):
charamistic way.
And said, Hey, I have someonethat should be on your show.
And she introduced me to both ofher sons.
And I immediately thought thatit was a good fit for the show.
So interviewing them completelyfell in love and felt the
brotherhood between us asindividuals.
(05:16):
But then they introduced me totheir mom, Cheryl.
And everything that she waslooking to do, and it really
coincided with my personal goalstoo.
And, you know, we kind of talkedabout it and chewed on it for a
while until Cheryl called me andbe like, hey, you know what?
Enough is enough.
We need to do something.
And we kind of like stepped outon faith, and here we are today.
(05:37):
Did I sum it up correctly?
Cheryl, my perspective.
SPEAKER_03 (05:42):
He didn't call me that crazy mother.
So No, I wasn't going to callyou.
SPEAKER_00 (05:46):
Who was he going to call you that?
SPEAKER_03 (05:48):
You know, I saw Jamil's post and I was like,
this is a guy that gets it.
And I have two sons, as Jameelmentioned, and a daughter.
She always gets left out of theconversation, but she's not part
of this particular conversation.
And my two sons had becomeTikTok famous for their platform
(06:10):
where my younger son, who isneurotypical, would try to stump
my older son, Zach, withquestions about superheroes.
And it was called Can You StumpMy Brother?
And within that, they developeda platform for sibling support
of somebody with autism.
And we got very fortunate thatwe were invited to speak with
(06:32):
the governor of Pennsylvania ata roundtable, and it turned into
a conversation about the 21 Pluscommunity and what needs to be
done.
And that led to being asked toreview a training on traffic
safety for people with autism,which led me to reach out to
Jamil again and say, hey,listen, we need to do something.
(06:52):
There's a gap between lawenforcement first responders and
the autism community.
Let's try to bridge it.
And that's where we began.
And I'm really glad that Inagged Jamil that day because it
was the right choice.
SPEAKER_01 (07:04):
I love it.
I love how you all came togetherand I love the work that you're
doing.
And I can't wait to learn moreabout it today.
And as you mentioned, you areboth the parents of autistic
children.
Can you share with us how youknew your children were autistic
and maybe what challenges youfaced early on that you face now
(07:26):
that they are older and anytriumphs associated with being a
parent to a special needs child?
SPEAKER_03 (07:32):
I'll take this one first since my son is older.
My son is now 26.
And interestingly, when he waslittle, probably less than two,
and we started our journey, hewas not speaking at that time.
I could see there weredevelopmental issues, and we
went to the developmentalpediatricians, and he was not
diagnosed with autism because atthat stage it was a much
(07:56):
narrower diagnosis, and theydidn't really know as much about
it 24, 25 years ago.
So we got a diagnosis ofpervasive developmental
disability, not otherwisespecified.
So PDD NOS.
It took numerous years to landon autism.
And at that stage, the kind ofthe diagnosis didn't really
(08:19):
matter because things weren'treally in place in the same way
as they are now.
We've come a long way.
But as I said, Zach is now 26.
He is verbal, he can speak, hehas some speech issues, but he's
done really well with it.
But definitely on the autismspectrum, we definitely deal
(08:40):
with a lot of the communicationand social development issues
that are common amongst peoplewith autism.
He lives at home, he lives withus, he probably always will.
That is definitely one of theissues that a lot of parents do
face, especially as they getolder, as I'm seeing with myself
and my husband.
(09:00):
But he's able to drive and he isable to do a lot of things.
So for that, we've had a lot ofsuccesses as well.
Jamil?
SPEAKER_00 (09:09):
So, Shane, my son, he's 17.
He's about to graduate highschool next year, actually.
So we're in that sweet spot ofmanhood and adulthood and what
that looks like.
But remembering back to thefirst signs of recognizing in a
man's eyes, it can look verymuch different because most of
(09:31):
us are going by societal normsof having, you know, a normal
child, an alpha male, perhaps,in some words, and seeing a
child that's exhibitingcharacteristics and behaviors
that you know are a little bitoff, even if you never had
children before, you have knownfrom just even being remotely
(09:53):
around children that those typeof characteristics are something
that you have never seen inother children.
That was my experience.
And seeing that scared me.
So it wasn't a reaction of let'sdo something about it, like most
autism moms or even some of theautism dads.
But in my case, it was scarybecause it was okay, something's
(10:17):
going on, but I'm afraid to evenopen that box, you know, to see
what's going on.
Until it became too rampant notto overlook these things.
Shane was diagnosed at the ageof three, and quite frankly, I
speak about this all the time.
Premonition in my mind was toleave because of the diagnosis,
(10:38):
leave my family, his mother Iwas married to at that time,
because I didn't have the rightsituation in life.
I didn't have a child that wasdeemed normal.
Now I have a special needschild.
So that killed my pride, killedmy ego, made me fearful when
instead of getting thatdiagnosis, I should be rearing
(11:02):
my head a little bit, leaningmore into my family to
understand at this time of needwhat my wife, my spouse needs,
or most importantly, who is myson now?
That I have this paperwork thatsays your son is completely
different of everything that youthought your son was going to
be.
Now, here's what it looks likeon a clinical standpoint.
(11:23):
You have to rewrite the rest ofthe story because now you're
going to have to learn and buildthat relationship.
Shane was diagnosed withAsperger's, which is no longer
separate from the autismspectrum.
It's a part of the DSMqualifications.
And, you know, he struggles withsocial interactions, just as
many of autistic individuals,but he thrives in school in
(11:45):
structured settings.
So while he's doing his lastyear, he's now looking towards a
trade school.
And I'm not forcefully, but I'mencouraging him to get into that
trade sooner than later.
Find out what it is.
Let's get you enrolled becausethe structure actually helps
you.
And that way it can structurehim right into hopefully a
(12:07):
career that could continuebuilding on his structure while
I work on the social cues withhim and understanding some of
the other adulting things oflife.
SPEAKER_01 (12:18):
Well, these are two very amazing stories, very
different stories, but amazingnonetheless.
And I heard both of you say, Ibelieve, the word spectrum, and
many people have heard of thespectrum as it relates to the
autism spectrum disorder, butmay not fully understand what
autism really means.
Can you define for us whatautism is and how it shows up in
(12:40):
different people, in differentcircumstances, and in varying
ways?
SPEAKER_03 (12:44):
So I read a really great quote that I thought
really explained it.
And it said, Autism influenceshow people experience and
interact with the world.
And I thought it's a reallyinteresting way of looking at
it.
So every person experiences theworld somewhat differently.
(13:04):
But as a category, people withautism have a different way of
experiencing the world.
It plays out in a lot of ways inhow they communicate, in how
they use eye contact, in theirbody language behaviors.
And it's difficult to say thisis autism because it presents
(13:24):
very differently in all people.
And we use the word spectrumbecause there's a really wide
range.
Autism has actually been brokendown into three categories
levels one, two, and three.
And as Jamil said, his son wasdiagnosed as having Asperger's.
Asperger's has now been foldedinto level one.
(13:47):
So people who are more able tofit into what is considered
social norms, while it stillmight not be easy, they have an
easier time.
They might be able to be taughtdifferent communication
strategies and be a part of theworld with less difficulty.
(14:10):
And then level two and thenlevel three, which we often
consider profound autism, whichoften has comorbidities with
intellectual disabilities orother issues that can compound
the problems.
And there is a huge range.
There's a huge range of skills,there's a huge range of
behaviors, and it's reallyimportant to know that because
(14:33):
you can't say, oh, I know whatautism is.
I met somebody with autism.
It's not like that.
Different people presentdifferently, and you have to be
willing to get to know anindividual, get to understand an
individual.
Even between Jamil and myself,we have two children who both
(14:53):
happen to fall into the categoryof level one autism, but they're
wildly different.
Jamil's son has skills that myson does not have, and vice
versa.
And how they approach the worldis very different, and how we
raise them is very different.
(15:14):
But they're both autistic andthey both fall under that
diagnosis code.
SPEAKER_00 (15:18):
I'm glad, Cheryl, that you touched on the levels
one, two, and three, becausethough we represent and we're
speaking about our personalstories, we have individuals
that represent level one.
We want to be cognizant of thosewho have loved ones that are
level two and level three, orrespect the autonomy of
autistics that may listen tothis podcast who fall within
(15:38):
those categories.
That's very important.
I often say that we asneurotypical people are the
disabled ones, and those who areneurodiverse or those who have
autism or any other ofconditions under the
neurodiversity tree are thosewho are normal.
The reason why I say that isbecause individuals like my son
(16:00):
Shane sees the world just forwhat it is.
They thrive off experiences thatheighten their education and
understanding of love, ofempathy, of compassion, of
togetherness, of communication.
I learned a lot in my lifetimefrom my son Shane.
I had to reprogram how Iactually view people,
(16:23):
neurotypical or neurodiverse,but also to how I view certain
situations in my life.
And that is to learn from them,to digest, to sit in them, and
actually teach others on how tonavigate around those issues.
That's the reason why me andCheryl are here today.
We all know, or if you do notknow, it's a neurological
(16:43):
condition.
So it's not something you cancatch.
It's not something that motherscause.
We debunked that with therefrigerator mom theory way back
when in the 60s.
But what we know about autismtoday is that it's a difference,
right?
And while you see so manydifferent ads from companies
expressing to be different, doyou, we don't shine a light on
(17:07):
these individuals because somefeel they take do you too far.
They are authentic in who theyare.
Yes, they have differences, butthey embrace them and they love
them and they don't care who'saround them, they welcome
everybody to indulge in thosedifferences.
So I really want people tounderstand that it's just
(17:28):
another way of looking at life.
Just like we turn to podcastersand inspirational speakers,
learn to love an autisticindividual, and you will
probably learn more out of thatone individual about this
journey we call life than whatyou would in anybody else who
was neurotypical.
SPEAKER_01 (17:47):
So, Jamil, I just want to go back to something you
said at the beginning of theshow and how when you first
heard your son's diagnosis, youwanted to run away.
You wanted to be out of thesituation because it was not
what you had anticipated yourson or your life to look like.
And you obviously have done acomplete 180 on this, right?
You are so immersed in thistopic.
(18:07):
How did that happen for you?
SPEAKER_00 (18:09):
Mine was a little bit more of a spiritual level,
connecting with change.
So I'll give you a littlebackground about my story.
I've been on my own since I was16.
I didn't really know my daduntil later on in my late 20s.
He's in my life now, been fullyfocused and immersed.
And my mom suffered fromschizophrenia and depression.
She actually was homeless.
(18:30):
She kicked me out at 16, andthen she just started being on
the streets because of herpsychosis.
So I had to learn how to liveoff of the streets.
This was well before Shane wasin a picture.
Shane came into the picturewhile I was trying to numb the
pain of life with more life, ifthat makes sense.
But the problem was I was alwaysgetting in a rat race.
(18:54):
I will always end up alone,financially broke, about to be
homeless myself, which I was incertain situations.
It was not until I fell to myknees and was crying and weeping
and saying, I can't do thisanymore, God.
I need help.
And this is a true story.
My son Shane was in his room,which was literally a hundred
(19:15):
feet away from me, and hecouldn't have heard because he
had cartoons on.
And he came running out and hehugged me.
And what I realized in thatmoment was that God was gracious
enough to give me a piece of himin an aesthetic form, actual
tangible form that I can hold.
So it was my best interest tolearn from Shane.
(19:39):
So I started to really unpackall of the callousness that went
to my heart, which meansreinventing myself, which means
sitting down and saying, okay,I've been doing fatherhood
wrong.
I've been doing life wrong.
Let me learn through my son.
So Shane began to teach me howto love people for who they are,
regardless of how they treatyou, how to properly interact
(20:01):
with those who don't knowexactly who you are or how you
present and want to learn more.
So Shane, he broke down a lot ofthese walls and he taught me,
but only because I asked for it.
I asked for it from my belief inmy creator.
And in my heart, truly 100%, heblessed me with a tangible
(20:21):
version of that, and that isthrough my son Shane.
SPEAKER_01 (20:24):
That's an amazing journey, and we are so fortunate
that Shane had that impact onyou, and so fortunate for Shane,
really, and because he hasreally allowed you to do some of
this work.
Now, parenting an autistic childmay look different, and in doing
so and working withprofessionals who work in an
autistic environment, what aresome of the fears that parents
(20:44):
have about their childrengetting diagnosed and what
stigmas exist?
SPEAKER_03 (20:49):
First of all, I want to say, do you see why I think I
have the perfect partner inthis?
SPEAKER_01 (20:54):
I really do.
I see it.
It's loud and clear.
SPEAKER_03 (20:56):
Oh, man.
It came through for the firsttime I saw his post.
So it just makes me tear upevery time I hear his story.
So I think lack of understandingis the first thing that we say
parents face.
It's fear.
There's a ton of fear out there.
There's a lot of people who arevery judgmental.
There are a lot of people whothink that they have the answer.
(21:17):
They can fix your child, theycan fix your parenting.
So it becomes very isolatingbecause you don't want to be
told all the time all the thingsyou're doing wrong.
Because the bottom line isyou're probably not doing
anything wrong.
You're doing the best you can.
And there's a lot of people outthere who are very quick to say,
(21:38):
oh, well, what you're doing iswrong.
You made this happen.
It's how you're raising yourchild, it's what you're doing
with your child.
That's what they're faced with.
So it causes people to retreatand just try to survive.
Even amongst professionals, Ithink we're beginning to see the
(21:59):
signs of people learning theindividual characteristics of
people with autism, not tryingto fit them into a box.
But there still is a lot ofthat.
If your child is autistic, do A,B, and C.
If your child is autistic, thisis the device, this is the
method, this is the behaviorprogram.
(22:21):
And that just doesn't work foreveryone.
It may work for some, but notfor all.
And we really have to be veryopen to the fact that these kids
are individuals.
When Zach was younger, I found afriend whose son also had
autism.
The boys were very similar andalso very different.
(22:44):
And we started meeting once aweek while the boys were in
school for what we calledtherapy.
We met at Panera, we had a cupof coffee, it was therapy
because she was the only personthat I could be 100% honest
with.
And that included members of myfamily.
But with her, we could actuallysay, This is what I heard, this
(23:08):
is what's upsetting me, this iswhat happened.
And hey, guess what?
This happened and it was great.
And you can't always get thatunderstanding.
And to Jameel says, you know,talk to people, meet someone
who's has autism, get to knowthem.
It's a gift.
Well, you need to be able tocelebrate with people who
(23:28):
understand.
And for people who don'tunderstand, listen, try to
celebrate with a parent becauseit's hard.
It's a very, very hard journey.
And we need people not to judge,not to always offer a solution.
Because there isn't a solution,and we don't need a solution.
We're not looking to fix ourkids.
(23:50):
And that goes for all our kids.
My two neurotypical kids havegiven me as much of a challenge
as my son Zach, and I wouldn'tchange any of them.
SPEAKER_00 (23:58):
You know what, Cheryl, to hear that, I think
people take that too lightly.
Like we don't need to fix ourchildren.
So, with respect to opinions,because a lot of people have
developed pain from this.
And in my personal opinion, onlyminds, Jamil Owens, not a
representative of CHOP, butJamil Owens, a father, a parent,
(24:19):
I think it's because theyhaven't really relinquished
their hold on life, meaningtheir control of what they want
their life to be like.
They haven't just let it go andsay, okay, I'm looking at this
from the wrong lens.
SPEAKER_03 (24:32):
I just wanted to add that I want to really respect
the fact that there are peoplewho have a much harder situation
when it comes to the levels ofautism.
When you're taking care ofsomebody who is profoundly
autistic, it is a very differentsituation from somebody who is
level one.
(24:53):
And we respect that and weunderstand that.
And for those parents out thereand caregivers, please
understand that we know that itis a difficult path.
We get it.
Our real thing is that peoplelooking in from the outside
don't judge so quickly.
Support, listen, hear.
(25:14):
Don't tell a person how to fixthe situation.
Understand that it is everyperson is facing what their
reality is.
And we have to respect theirreality and help them in their
reality, not to try to change itor tell them how to change it.
SPEAKER_01 (25:33):
Yeah, thank you for adding that.
I think that's a very importantidea for us to keep in mind.
Jameel, it sounds like yourexperience as a parent to an
autistic child has carved thepath to where you are now the
CEO of Awesomeness and thecoordinator at the Center for
Autism Research.
Can you tell us about the workyou do at these two entities and
(25:54):
how it is designed to make apositive and significant impact
in the autistic space?
SPEAKER_00 (25:59):
Yeah, so I'll start real quick just with the family
relations coordinator at theCenter for Autism Research at
CHOP.
My position was never therebefore.
I was given the opportunity topresent while I was working at
CHOP in security to their LENprogram, which is Leadership,
Education, and Neurodiversity.
It's a national cohort that'sfunded by the government.
(26:23):
I was the first father toactually present in their entire
cohort.
So the entire program that hasbeen well established years
before, I was the first fatherthat was offered because of all
the work I was doing since 2014.
After that presentation, one ofthe directors came up to me and
she said, I think we have aposition for you if you're
(26:44):
interested.
And I said, Sure.
So I met with all of theinfrastructure positions within
the center where I work at, myco-workers, and there was one
issue (26:54):
my education.
So my education background, Ididn't have a degree in
anything.
And I remember I was talking ona phone because my wife now was
actually, she was giving birthto our now three-year-old son.
And I was in the hospitaltalking to them, and I was like,
listen, I don't have the degree,but I can do the job.
And they said, okay, well, letus talk.
(27:16):
We'll get back to you in twoweeks.
And they got back to me in twoweeks and they took away that
education.
And I interviewed some more andI came into that position
swinging, knowing thateverything that I've established
for myself, now I get to do whatI always wanted to do, and that
was to give to everybody else.
So that's that portion, that'swhere I'm at currently right
(27:36):
now.
SPEAKER_01 (27:37):
I mean, yeah, you're obviously a subject matter
expert.
SPEAKER_00 (27:40):
I wouldn't say expert, but you know, you're a
lot closer than I am.
SPEAKER_01 (27:45):
I mean, you and Cheryl both are subject matter
experts through livedexperience.
And that is something that wefocus on a lot at Genesis
Women's Shelter and Support,which is the founder of the
conference, is that survivorsare the experts, right?
So survivors of gender-basedviolence, domestic violence are
the experts in what thatexperience is like.
(28:05):
As parents of children who haveautism, in a way, you are a
lived experience expert becauseyou are coming up around it
alongside, you're learning withthem what this life is going to
be like.
SPEAKER_00 (28:18):
Yeah.
I mean, in that form, yes, wedefinitely are.
And me and Cheryl, we encourageparents and communities in which
we speak to, and even autisticindividuals, self-advocates,
that they are the expert.
They have a voice and toactually use it.
And that point, yes, definitely100%.
I've been blessed to be able tobe that.
I guess once again, relying onimperfect statistics and things
(28:41):
in society.
I don't have a PhD or anythingto back my name, but we don't
need that.
You know, we don't need thatexactly.
Awesomeness Incorporated is anonline platform that is still
being developed.
Shout out to Cheryl Son Josh,who is a website direct program
developer with his own companyto help me form this website,
(29:02):
but it's a one-stop shop foranyone within the entire nation
to actually come on to getresources in their specific
neighborhood.
What makes this website a littlebit different is that it really
relies on the community to vetout resources for other moms,
other awesome dads, otherawesome families, in order for
(29:24):
them to get the services inwhich they're looking for.
So we're still developing.
It is together, it is up.
You can log on right now and seesome of the information.
We also have some podcasts fromlocal moms from all around the
Philadelphia tri state area,dads as well, too, who are just
making a difference one voice ata time.
(29:44):
So that's really what theplatform is going to shoot off a
little bit more this year as I'mrearranging my work schedule.
But yeah, that's enough aboutme.
SPEAKER_01 (29:54):
It's fascinating and amazing, and it sounds like
somehow you found your purposein life very serendipitously.
Now, Cheryl, like Jameel, itsounds like your personal
experiences have motivated youto start OT, A-U-T-T, as it's
spelled.
What is OT about and who is thetraining geared towards?
What does the training entail?
(30:14):
Just tell us so much more.
SPEAKER_03 (30:16):
So, as I said earlier, when I was approached
to review the training programfor traffic stops for law
enforcement officers, when theywere stopping somebody with
autism, I saw there was a realneed for more education.
It was a program that wasdeveloped with the best of
intentions, but by people whodid not know what autism really
(30:41):
was.
And fortunately, when Iapproached Jamil and we started
working on the program, we wereable to take our program to the
municipal police forPennsylvania and make it an
official program for them tohave for their continuing
(31:01):
education.
And at the same time, it gave usthe platform to go and teach law
enforcement officers aboutautism.
And we weren't teachingstatistics and medical
diagnoses.
We were teaching what it was tobe dealing with an individual
who has autism, to beinteracting with an individual.
(31:23):
What were the maincharacteristics?
Body language, eye contact,communication.
And we tried to make it reallyattainable, real life-based,
stories that were relevant, givescenarios that were relevant,
talk, communication,conversation with law
(31:43):
enforcement officers.
And that then propelled usforward to develop a similar
training for firefighters andfor EMT and for juvenile
probation officers.
And then we started training thelawyers at the Attorney
General's office.
So we've been very fortunatethat we've been able to approach
(32:05):
people in a lot of differentparts of the first responder
community.
And then what we've done is alsotake that information back to
the community.
So instead of saying, hey, thisis all on the police, this is
all on the firefighters, this isall their responsibility, we go
to the community and we say,hey, this is your responsibility
(32:27):
too.
If we're going to bridge thisgap, we need both sides coming
together.
We need the community.
Go meet your law enforcementofficers.
Go see what a firefighter isgoing to be wearing when they
come into your house.
If they have to come into yourhouse.
(33:00):
Have that ready.
So we can go back to thecommunity and say, hey, listen,
we're teaching the lawenforcement officers, and we're
also teaching you.
And it takes responsibility onboth sides to come together to
make these interactions morelikely to succeed.
And we always say to them, youdon't want to be on the news.
(33:22):
That's our goal.
We want to stop anything fromgoing wrong before it gets to
the news.
And we can do that if we educateeach other, if we talk to each
other, if we communicate witheach other, and most of all, if
we work with each other.
So Ought is really focused onproviding that training.
And then we're also trying towork with legislation to share
(33:47):
what is out there, what is beingdone.
Right now, obviously, becausewe're in Pennsylvania, we're
dealing mostly withPennsylvania, but we're hoping
to see some legislation thatcould become national.
And while we're working inPennsylvania, we're using
examples of bills and laws andprograms that have been used in
(34:09):
other states and successfullyused.
And we're trying to get thatattention to make sure that we
have the best opportunities outthere to improve those
relationships.
SPEAKER_01 (34:21):
Thank you for that.
And along those lines, what aresome autistic-related behaviors
that often go unrecognized ormisinterpreted?
And how do autistic childrentypically embrace the law
enforcement concept?
SPEAKER_03 (34:33):
An example that I didn't learn for a long time.
I talk about eye contact.
Difficulty with eye contact isvery common amongst people with
autism.
And Zach is 26 now.
For the first 20 years of hislife, I would say to him, Zach,
look me in the eye.
(34:55):
I'm talking to you.
You're talking to me.
Look me in the eye.
It took me a long time to reallyunderstand that eye contact was
incredibly difficult for him,and it is for many people with
autism.
So when we look at policetraining, police officers are
very often taught if somebodydoesn't look you in the eye,
(35:18):
there's a reason.
They're being deviant, perhapsthey're on drugs, they might be
drunk.
They don't want to have thisconversation with you.
So if police officers are taughtthat, and people with autism
have difficulty making eyecontact, you can already see a
huge way where theseinteractions can go badly.
(35:43):
So that was one area that Ilearned that we really focus on
in training.
There's a lot of body languageissues that you can see causing
problems.
Stimming is very common amongstpeople with autism.
Stimming is moving your body.
It could be blinking, it couldbe using your hand to do
(36:04):
something, it can beheadbanging, and it can be
moving.
It can play out in a whole rangeof ways.
Police officers, obviously, whenthey're questioning you, want
you to stand still.
If you start moving erratically,that could cause a problem.
(36:24):
So we're teaching them aboutthat.
Communication is a huge one.
When somebody hears a questionand can't answer it or answers
something different from whatyou ask them, that can be
misinterpreted really easily.
But again, communication issuesare very common amongst people
(36:47):
with autism.
So we are trying to address allof those issues so that a law
enforcement officer, a firstresponder, when they see some of
those more obvious behaviors,they can all of a sudden say,
Oh, wait a second.
Maybe I'm dealing with autismhere, not deviant behavior, not
(37:10):
avoidance.
SPEAKER_01 (37:11):
What are some of the ways that a law enforcement
officer or other professionalcan determine if they are in
fact speaking with someone whomay have autism or something
that isn't deviant, beingdeviant behavior or dangerous
behavior?
SPEAKER_00 (37:27):
It's simple.
Just ask.
So I think we're in some aspectof law enforcement and
communication, we'reoverthinking it.
We're making it too hard.
You know, officer approaches avehicle, how you doing, sir or
ma'am?
Um officer's, you know, Owens,do you know why I'm stopping
you?
As easy as it is to ask, do youknow what I'm stopping you?
(37:48):
And can I see licenseregistration and proof and
insurance?
Ask it.
Is there anybody in a car or doyou yourself have any
neurological conditions I needto be aware of?
Are you neurodiverse by anychances?
No?
Okay, great.
You just check the box.
I think people associate autismand the conversations around it
to be so taboo, so tabooed tothe point where we can advertise
(38:10):
and talk about sex openly,right?
But we can't talk aboutneurodiversity because that
implies that someone is toodifferent or ew, I don't want to
associate with that person.
So I think the best answer isjust ask.
As officers are out in the fieldwhere the real training is.
I learned this in my experience.
Uh, get into a habit to askthese questions when approaching
(38:31):
a vehicle, or if it's not afelony stop, the vehicle felony
stop, you asking an individualout in the street.
Is there anything you would liketo tell me?
Any conditions I need to beaware of?
Officers are doing this duringpack downs.
Do you have any weapons on you?
Is there anything else I need toknow before I continue to search
you?
So put that in your rotation ofquestions, and I think that
alleviates a lot ofmisconceptions and a lot of
(38:52):
miscommunication.
SPEAKER_03 (38:54):
And on the flip side, as a person, if you're
being stopped, we've got to becomfortable saying, I have
autism.
As we work to bridge this gapbetween law enforcement, to
build the trust between the twocommunities, and that's really
what we need to do, becausethere is mistrust.
So as we work so hard to buildthe trust between the two
(39:17):
communities, we have to havepeople with autism meeting
halfway and being okay saying, Ihave autism, I have trouble
looking you in the eye, or Ineed to move around.
I can't sit still, I'm going tostem.
And we're trying, there arecommunication devices, there are
things like blue envelopes,information sheets, emergency
(39:40):
contact information.
Some states have notations onthe licenses that allow that
kind of communication to happenmore easily.
But both sides have to bewilling to talk and to
communicate and to shareinformation.
That's what's going to help inthe long run.
We have to take away the stigmaand the fear, and that's a
(40:04):
process.
I'm not saying that's easy, butwe have to work towards making
it where I can say, I haveautism, and the police officer
recognizes and respects that.
SPEAKER_01 (40:21):
Yeah, and I think that's a process too.
It's a huge process.
Getting to the point of feelinglike you wouldn't be targeted
for that.
We live in a somewhat unstableenvironment right now.
SPEAKER_03 (40:34):
We're not there yet.
No.
SPEAKER_01 (40:35):
Yeah, and I appreciate you bringing that up
and acknowledging it that it'sgoing to take more time.
And it's going to take all of usto kind of get there.
Now, I'd like to understand alittle bit more about the
behaviors that could gounrecognized or misinterpreted
by law enforcement, as well ashow open are law enforcement and
(41:01):
other professionals to learningabout this type of response and
also practicing what they learnin training?
SPEAKER_03 (41:10):
We have really met so many law enforcement officers
and first responders who want toknow.
First of all, many of them willsay to us, oh yes, my nephew, my
best friend's son, my, you know,they know someone.
We're one in 31 now.
(41:30):
The numbers of people withautism continue to grow.
A lot of people now know whatautism is in general.
Not specifically, they may nothave ever met someone, but the
words are out there.
The term is out there.
So there's a base awareness.
And most of the law enforcementofficers we meet, they want to
(41:53):
know.
They don't want to be on thenews.
They don't want to hurt someone,but they don't know what they
don't know.
And just like I didn'tunderstand the eye contact, and
I have a child with autism, howwould they know?
So we have found that they arevery open to learning and to
(42:15):
trying to do better and to bemore open to this learning.
So from that aspect, it's beenvery positive.
Now, have I met officers in all50 states?
I haven't.
But I do want to believe thatwhen you approach someone and
you say to them, let's worktogether, and you don't say to
(42:36):
them, you're wrong, you'remessing up, you don't get it,
you're not going to alienatethem.
If we can work together and say,hey, this is just to help you.
It's to help our community andit's to help your community, and
it's to bring us both togetheras one community, you're going
to have a positive reaction mostof the time.
(42:58):
Now, are there going to beexceptions?
Probably.
There's exceptions to everyrule.
But we have generally found thatpeople are very much looking to
do the right thing.
SPEAKER_00 (43:09):
I think we definitely want to take a
neutral response to kind ofresponding to some of the
characteristics because we wantto respect clinicians, right?
Doctors who study this, that'stheir field.
We're not that, but we do havethe lived experience.
So I'll speak on some of thecharacteristics that I've
experienced with Shane, whichwas hand flapping, the absence
(43:32):
of eye contact, knowing when hisname is called.
That was another issue thatShane actually had when I would
call his name.
He wouldn't respond to my calls.
Flapping of the hands, walkingon tippy toes, staring is
another part of stemming aswell.
More common in some of the youngadults and adults who are
(43:53):
autistic currently, right now,today.
But also, I want to say amaternal instinct is the best
identifier among anything.
What I mean by that is that youknow there's something going on
with their child, or you pick upon certain things.
It may be a sniffle one day fromyour child, they may be extra
clingy to you, and you knowthat, hey, my child is about to
(44:16):
get sick.
I know it's coming.
I would encourage parents toexplore what they are actually
feeling with their pediatrician,right?
You should be able to be openwith your pediatrician and to
really address your concernswithout sounding like a crazy
mad woman.
See, Cheryl, I did say it.
But they should respect.
SPEAKER_03 (44:36):
Don't just call me a crazy mad woman.
SPEAKER_01 (44:41):
Okay, guys, that's a different episode.
Okay, we can't go there today.
SPEAKER_00 (44:47):
Or really, I think if you know there's something
going on with your child, Ithink you should really address
that with your pediatrician.
If it is an older child, I thinkyou should address it with their
doctor.
If it is a young adult goinginto that transitional stage, I
think you should haveconversations with your child to
say, hey, I noticed a couplethings you're doing.
(45:07):
Are you okay?
Is there anything else maybeyou're experiencing that you
don't know what's going on?
Maybe I could talk to you aboutor find out more information.
I think that's the best thing.
We pay too much attention tomilestones.
And milestones don't work forboth neurotypical and
neurodiverse children.
It's a great structure.
It's great to sit there and belike, okay, they should be doing
(45:29):
this and doing this.
But I know people, kids who hada girl who started walking, you
know, two months in versussomeone that's around age two.
So it can really vary foreverybody.
So that's really my suggestion.
SPEAKER_01 (45:43):
Those points are very well taken.
Let's just touch back on theinteractions with law
enforcement and others again.
I want to understand what lawenforcement or other
professionals versus responderscould do to de-escalate
situations that spin out ofcontrol.
SPEAKER_03 (46:01):
It's taking a minute to analyze an individual.
Sometimes just stepping back andlooking at the situation and
thinking, okay, what if mytraining would explain some of
these behaviors that I'm seeing?
That can diffuse a situation andjust give everybody a minute to
(46:25):
breathe and say, oh, wait asecond.
So they're not looking me in theeye, or they keep flapping their
hands.
Wait, I've heard that.
I know what that is.
That is autism, or they'restaring at me.
Wait a second, I heard maybethere's another way to
communicate.
Maybe I need to pull out myphone and type what I'm asking.
(46:46):
Maybe I need to ask them, do youhave something written down that
you'll be able to use to show mewhat is going on?
Is there another communicationmethod?
Or is there somebody I can talkto?
An emergency contact?
Or is if a law enforcementofficer sees there's some other
(47:07):
person at the scene, hey, canyou tell me what's going on?
Can you explain the situation?
If you can just take those fewseconds and think about what
else the situation couldpossibly be, and not jump to the
worst possible assumption.
(47:28):
They're not trying to run awayfrom me.
They just keep moving around.
Why is that?
And that would be our firstthing.
Stop and think.
Now, of course, we recognizethat law enforcement has to make
sure that they're safe, thesituation is safe, the person is
safe, and they've got to bemaking a ton of decisions very
(47:51):
quickly.
And we get that and we respectthat.
So sometimes they're not able totake that time, but very often
they can.
They can step back, they canlook at it for a second, they
can get information from theperson who sent them to the
scene.
Get all that communicationinformation before you get
(48:11):
there.
So that's what we recommend.
Get as much information as youcan and really analyze the scene
from the individual perspective.
SPEAKER_01 (48:20):
Yeah, that's excellent advice, and I
appreciate all of that feedback.
I want to touch on before I letyou go, talking about this
subject within the context ofdomestic violence.
What would be some of theobstacles for mothers or
families or what vulnerabilitiesexist when there's a child with
autism in a family that's alsoexperiencing domestic violence?
(48:44):
What advice would you have formothers to make the right
decisions both for their familyand for their child?
SPEAKER_03 (48:52):
One of the things that is really difficult for
most people with autism isunpredictability.
And these situations they becomevery unpredictable if you have
to get out of a place veryquickly, if you're going
somewhere that the child is notfamiliar with, there can be a
lot of unpredictability.
So you can anticipate that'sgoing to be very difficult on
(49:15):
somebody with autism.
So again, what we would stressis for open conversation, you've
got to, when you arrivesomewhere, let's say you have a
child who has autism, and nowyou're bringing them into a very
unpredictable situation.
Be open, explain to thatprovider, to the place you're
(49:37):
going, hey, my child has autism.
He or she may need a quietplace.
Is there a room we can go to ifthey start to have a sensory
overload?
One of the things we recommendall the time for all parents of
individuals with autism is packa bag with the things that are
(49:58):
familiar to your child, whetherit's a lovey, a toy they really
rely on, a blanket they rely on,a certain food.
Have that.
So if you have to move quickly,you can grab that bag and it's
got those items with you a setof headphones, a communication
device, and give them thatcomfort in an unpredictable
(50:24):
space.
At least they have that therefor them.
And it can be very basic things,some fidget spinners, something
that makes them comfortable, butalso explain the situation in
your safe place wherever you getto, so that the people around
you can support you.
Don't hide it.
(50:44):
Because you are going to needsupport.
And if you're going into ashelter or into some kind of
protective home, that's whatthey're there to do.
They're there to support you.
Take that support.
Don't hide the autism.
It's nothing to be ashamed of.
Let them support you.
SPEAKER_01 (51:00):
Those are really great points for reflection and
a good call to action foreverybody, really.
Before I let you go, there's alot of research out there that
informs us of the lack ofawareness, training, funding,
and resources surroundingintellectual or developmental
disabilities.
What would each of you say needsto be done on a legislative
level regarding autism?
SPEAKER_03 (51:22):
I would love to see mandated training.
It needs to be updatedconstantly.
As we know, it needs to berepeated, it needs to be
updated, it needs to be shared,it needs to be taught by people
who understand it.
You can't just put anyone infront of a room reading a
document.
It needs to be taught by peoplewho can have a conversation
(51:46):
about what really it is to beliving with autism.
There needs to be more funding.
There needs to be more support.
We need to change the tone ofthe conversation.
We need to bridge gaps.
There's too much judgment outthere.
We need to listen to each other.
That's with everything, youknow, throughout this country.
(52:08):
We need to listen and be able totalk to each other.
But with autism, let's behonest, let's be open, let's
support, and let's stop judging.
SPEAKER_01 (52:18):
Yeah, I completely agree with what you're saying
for this reason and so manyothers.
And the journey with autismspectrum disorder is so new.
I mean, to your point back 24years ago, when your son was not
even actually diagnosed withautism at that time, and to now,
and I mean, even the 10 years inbetween your son's lack of
(52:41):
diagnosis and Jamil's son'sactual diagnosis, which they
occurred just about 10 yearsapart, if I remember the ages
correctly, there was a leap.
And it took complete Yeah, ittook time.
And I think this is again, it'sstill such a new journey for all
of us to really understand whatit means to be autistic and live
(53:01):
as a person with autism, that weneed more time, we need a lot
more resources, and wedefinitely need some
legislation.
Jamil, you get the last word.
SPEAKER_00 (53:09):
The reason why me and Cheryl are doing these
trainings because we're bridgingthat gap on law enforcement
first responder side, but we'realso having parents step up and
being like, hey, if they can beadvocates like this and do this
amazing stuff, I can too.
And now we're building ournetworks of villages and
advocates to help support thisentire population.
SPEAKER_03 (53:30):
And their caregivers.
We don't want to forget aboutthe parents.
SPEAKER_01 (53:33):
I really enjoyed learning from both of you.
Thank you so much for being hereand for the work that you do.
SPEAKER_03 (53:38):
Thank you.
SPEAKER_01 (53:40):
Thanks so much for listening.
Until next time, stay safe.
The 21st Annual Conference onCrimes Against Women will be
held May 18th through the 21st,2026, in Dallas, Texas.
Learn more at conferencecaw.organd be the first to know about
all conference details, as wellas the latest on the Institute
(54:02):
for Coordinated CommunityResponse, Annual Conference
Summit, Beyond the Bounds, andthe National Training Center on
Crimes Against Women.
When you follow us on socialmedia at NationalCCAW,
The subject matter of this podcast will address
difficult topics with multipleforms of violence and
identity-based discriminationand harassment.
We acknowledge that this contentmay be difficult and have listed
specific content warnings ineach episode description to help
create a positive, safeexperience for all listeners.
SPEAKER_02 (00:20):
In this country, 31 million crimes, 31 million
crimes are reported every year.
That is one every second.
Out of that, every 24 minutes,there is a murder.
Every five minutes, there is arape, every two to five minutes,
there is a sexual assault.
Every nine seconds in thiscountry, a woman is assaulted by
someone who told her that heloved her, by someone who told
(00:41):
her it was her fault, by someonewho tries to tell the rest of us
it's none of our business.
And I am proud to stand heretoday with each of you to call
that perpetrator a liar.
SPEAKER_01 (00:58):
Approximately one in 31 eight-year-olds in the United
States were diagnosed withautism spectrum disorder in
2022, according to the CDC'slatest ADDM Network report.
This marks an increase in one in36 reported in 2020 and 1 in 44
in 2018.
Some sources estimate that about1 in 45 in the United States are
(01:22):
autistic.
Rising prevalence nearlycertainly reflects improved
screening, broader diagnosticcriteria, and greater awareness
rather than solely an actualincrease in ASD incidents.
As it were, people withintellectual or developmental
disabilities often benefit fromspecialized care and support
tailored to their unique needs.
(01:43):
This care can help them livefulfilling lives, improve their
independence, and participatemore fully in their communities,
with the goal being to providerespect, dignity, and
opportunities for growth whileaccommodating challenges they
may face.
To narrow the scope, it iswidely believed that crimes
against individuals withdisabilities are widely
underreported.
As individuals with autismspectrum disorders are generally
(02:05):
taught compliance from a veryyoung age, have difficulty
picking up on social cues, andmay also have intellectual
disabilities.
They can be easy targets forcriminals.
Specifically speaking, whenfirst responders such as police,
firefighters, or paramedicsencounter autistic children,
there are importantconsiderations that must be
(02:25):
embraced to ensure safety,effective communication, and a
positive outcome.
Today's conversation will bewith Jamil Owens and Cheryl
Steele.
Both have autistic children, andwe will discuss the need for
autistic related awareness,advocacy training, and reform.
Jamil Owens is the CEO ofAwesomeness, the Family
Relations Coordinator for theCenter for Autism Research at
(02:47):
Children's Hospital ofPhiladelphia, and has served as
a law enforcement officer, acivil servant, and volunteer
firefighter.
As a father of a 16-year-old boywho is on the autism spectrum,
Mr.
Owens is truly an advocate forhis son Shane and other autism
parents.
He has been through manychallenges and triumphs in his
life as a disabled individualhimself, which has led him to
(03:10):
give back to other men who maybe experiencing the same issues
within their own lives, butwithout someone to speak to
about them.
Cheryl Steele is the founder ofAug, A U T T, which stands for
Autism Toolbox Training, aformer teacher and passionate
advocate who works to bringunderstanding about autism to
people around her.
(03:31):
Ms.
Steele's involvement in bridgingthe gap between individuals with
autism and the law enforcementand first responder communities
stems from a desire to helpothers who may not have time,
ability, or resources to speakout on their own behalf.
She relies heavily on herrelationships with other
advocates as well as members oflaw enforcement community to
(03:52):
share a message of hope,cooperation, and understanding.
Thank you.
It's good to be here.
As our listeners heard in yourbackground and bio, your worlds
intersect in very meaningfulways.
How did the two of you cometogether and meet?
SPEAKER_00 (04:08):
So, outside of my roles working at Children's
Hospital in Philadelphia, andwell before my role there, I
started a successful platformcalled The Awesome Show.
This was back in 2014, really tohelp autism fathers like myself
kind of understand thecomplexities around fatherhood
and what it means to beintentional in the life of their
(04:30):
child and their family.
That went on and still goes ontoday as a podcast and a
successful platform.
And that's how I came about withCheryl's two sons, Zach and
Josh, is because I was puttingvarious posts out looking and
searching for guests to be onthe show.
And Cheryl seen one of my postsand responded in a very
(04:54):
charamistic way.
And said, Hey, I have someonethat should be on your show.
And she introduced me to both ofher sons.
And I immediately thought thatit was a good fit for the show.
So interviewing them completelyfell in love and felt the
brotherhood between us asindividuals.
(05:16):
But then they introduced me totheir mom, Cheryl.
And everything that she waslooking to do, and it really
coincided with my personal goalstoo.
And, you know, we kind of talkedabout it and chewed on it for a
while until Cheryl called me andbe like, hey, you know what?
Enough is enough.
We need to do something.
And we kind of like stepped outon faith, and here we are today.
(05:37):
Did I sum it up correctly?
Cheryl, my perspective.
SPEAKER_03 (05:42):
He didn't call me that crazy mother.
So No, I wasn't going to callyou.
SPEAKER_00 (05:46):
Who was he going to call you that?
SPEAKER_03 (05:48):
You know, I saw Jamil's post and I was like,
this is a guy that gets it.
And I have two sons, as Jameelmentioned, and a daughter.
She always gets left out of theconversation, but she's not part
of this particular conversation.
And my two sons had becomeTikTok famous for their platform
(06:10):
where my younger son, who isneurotypical, would try to stump
my older son, Zach, withquestions about superheroes.
And it was called Can You StumpMy Brother?
And within that, they developeda platform for sibling support
of somebody with autism.
And we got very fortunate thatwe were invited to speak with
(06:32):
the governor of Pennsylvania ata roundtable, and it turned into
a conversation about the 21 Pluscommunity and what needs to be
done.
And that led to being asked toreview a training on traffic
safety for people with autism,which led me to reach out to
Jamil again and say, hey,listen, we need to do something.
(06:52):
There's a gap between lawenforcement first responders and
the autism community.
Let's try to bridge it.
And that's where we began.
And I'm really glad that Inagged Jamil that day because it
was the right choice.
SPEAKER_01 (07:04):
I love it.
I love how you all came togetherand I love the work that you're
doing.
And I can't wait to learn moreabout it today.
And as you mentioned, you areboth the parents of autistic
children.
Can you share with us how youknew your children were autistic
and maybe what challenges youfaced early on that you face now
(07:26):
that they are older and anytriumphs associated with being a
parent to a special needs child?
SPEAKER_03 (07:32):
I'll take this one first since my son is older.
My son is now 26.
And interestingly, when he waslittle, probably less than two,
and we started our journey, hewas not speaking at that time.
I could see there weredevelopmental issues, and we
went to the developmentalpediatricians, and he was not
diagnosed with autism because atthat stage it was a much
(07:56):
narrower diagnosis, and theydidn't really know as much about
it 24, 25 years ago.
So we got a diagnosis ofpervasive developmental
disability, not otherwisespecified.
So PDD NOS.
It took numerous years to landon autism.
And at that stage, the kind ofthe diagnosis didn't really
(08:19):
matter because things weren'treally in place in the same way
as they are now.
We've come a long way.
But as I said, Zach is now 26.
He is verbal, he can speak, hehas some speech issues, but he's
done really well with it.
But definitely on the autismspectrum, we definitely deal
(08:40):
with a lot of the communicationand social development issues
that are common amongst peoplewith autism.
He lives at home, he lives withus, he probably always will.
That is definitely one of theissues that a lot of parents do
face, especially as they getolder, as I'm seeing with myself
and my husband.
(09:00):
But he's able to drive and he isable to do a lot of things.
So for that, we've had a lot ofsuccesses as well.
Jamil?
SPEAKER_00 (09:09):
So, Shane, my son, he's 17.
He's about to graduate highschool next year, actually.
So we're in that sweet spot ofmanhood and adulthood and what
that looks like.
But remembering back to thefirst signs of recognizing in a
man's eyes, it can look verymuch different because most of
(09:31):
us are going by societal normsof having, you know, a normal
child, an alpha male, perhaps,in some words, and seeing a
child that's exhibitingcharacteristics and behaviors
that you know are a little bitoff, even if you never had
children before, you have knownfrom just even being remotely
(09:53):
around children that those typeof characteristics are something
that you have never seen inother children.
That was my experience.
And seeing that scared me.
So it wasn't a reaction of let'sdo something about it, like most
autism moms or even some of theautism dads.
But in my case, it was scarybecause it was okay, something's
(10:17):
going on, but I'm afraid to evenopen that box, you know, to see
what's going on.
Until it became too rampant notto overlook these things.
Shane was diagnosed at the ageof three, and quite frankly, I
speak about this all the time.
Premonition in my mind was toleave because of the diagnosis,
(10:38):
leave my family, his mother Iwas married to at that time,
because I didn't have the rightsituation in life.
I didn't have a child that wasdeemed normal.
Now I have a special needschild.
So that killed my pride, killedmy ego, made me fearful when
instead of getting thatdiagnosis, I should be rearing
(11:02):
my head a little bit, leaningmore into my family to
understand at this time of needwhat my wife, my spouse needs,
or most importantly, who is myson now?
That I have this paperwork thatsays your son is completely
different of everything that youthought your son was going to
be.
Now, here's what it looks likeon a clinical standpoint.
(11:23):
You have to rewrite the rest ofthe story because now you're
going to have to learn and buildthat relationship.
Shane was diagnosed withAsperger's, which is no longer
separate from the autismspectrum.
It's a part of the DSMqualifications.
And, you know, he struggles withsocial interactions, just as
many of autistic individuals,but he thrives in school in
(11:45):
structured settings.
So while he's doing his lastyear, he's now looking towards a
trade school.
And I'm not forcefully, but I'mencouraging him to get into that
trade sooner than later.
Find out what it is.
Let's get you enrolled becausethe structure actually helps
you.
And that way it can structurehim right into hopefully a
(12:07):
career that could continuebuilding on his structure while
I work on the social cues withhim and understanding some of
the other adulting things oflife.
SPEAKER_01 (12:18):
Well, these are two very amazing stories, very
different stories, but amazingnonetheless.
And I heard both of you say, Ibelieve, the word spectrum, and
many people have heard of thespectrum as it relates to the
autism spectrum disorder, butmay not fully understand what
autism really means.
Can you define for us whatautism is and how it shows up in
(12:40):
different people, in differentcircumstances, and in varying
ways?
SPEAKER_03 (12:44):
So I read a really great quote that I thought
really explained it.
And it said, Autism influenceshow people experience and
interact with the world.
And I thought it's a reallyinteresting way of looking at
it.
So every person experiences theworld somewhat differently.
(13:04):
But as a category, people withautism have a different way of
experiencing the world.
It plays out in a lot of ways inhow they communicate, in how
they use eye contact, in theirbody language behaviors.
And it's difficult to say thisis autism because it presents
(13:24):
very differently in all people.
And we use the word spectrumbecause there's a really wide
range.
Autism has actually been brokendown into three categories
levels one, two, and three.
And as Jamil said, his son wasdiagnosed as having Asperger's.
Asperger's has now been foldedinto level one.
(13:47):
So people who are more able tofit into what is considered
social norms, while it stillmight not be easy, they have an
easier time.
They might be able to be taughtdifferent communication
strategies and be a part of theworld with less difficulty.
(14:10):
And then level two and thenlevel three, which we often
consider profound autism, whichoften has comorbidities with
intellectual disabilities orother issues that can compound
the problems.
And there is a huge range.
There's a huge range of skills,there's a huge range of
behaviors, and it's reallyimportant to know that because
(14:33):
you can't say, oh, I know whatautism is.
I met somebody with autism.
It's not like that.
Different people presentdifferently, and you have to be
willing to get to know anindividual, get to understand an
individual.
Even between Jamil and myself,we have two children who both
(14:53):
happen to fall into the categoryof level one autism, but they're
wildly different.
Jamil's son has skills that myson does not have, and vice
versa.
And how they approach the worldis very different, and how we
raise them is very different.
(15:14):
But they're both autistic andthey both fall under that
diagnosis code.
SPEAKER_00 (15:18):
I'm glad, Cheryl, that you touched on the levels
one, two, and three, becausethough we represent and we're
speaking about our personalstories, we have individuals
that represent level one.
We want to be cognizant of thosewho have loved ones that are
level two and level three, orrespect the autonomy of
autistics that may listen tothis podcast who fall within
(15:38):
those categories.
That's very important.
I often say that we asneurotypical people are the
disabled ones, and those who areneurodiverse or those who have
autism or any other ofconditions under the
neurodiversity tree are thosewho are normal.
The reason why I say that isbecause individuals like my son
(16:00):
Shane sees the world just forwhat it is.
They thrive off experiences thatheighten their education and
understanding of love, ofempathy, of compassion, of
togetherness, of communication.
I learned a lot in my lifetimefrom my son Shane.
I had to reprogram how Iactually view people,
(16:23):
neurotypical or neurodiverse,but also to how I view certain
situations in my life.
And that is to learn from them,to digest, to sit in them, and
actually teach others on how tonavigate around those issues.
That's the reason why me andCheryl are here today.
We all know, or if you do notknow, it's a neurological
(16:43):
condition.
So it's not something you cancatch.
It's not something that motherscause.
We debunked that with therefrigerator mom theory way back
when in the 60s.
But what we know about autismtoday is that it's a difference,
right?
And while you see so manydifferent ads from companies
expressing to be different, doyou, we don't shine a light on
(17:07):
these individuals because somefeel they take do you too far.
They are authentic in who theyare.
Yes, they have differences, butthey embrace them and they love
them and they don't care who'saround them, they welcome
everybody to indulge in thosedifferences.
So I really want people tounderstand that it's just
(17:28):
another way of looking at life.
Just like we turn to podcastersand inspirational speakers,
learn to love an autisticindividual, and you will
probably learn more out of thatone individual about this
journey we call life than whatyou would in anybody else who
was neurotypical.
SPEAKER_01 (17:47):
So, Jamil, I just want to go back to something you
said at the beginning of theshow and how when you first
heard your son's diagnosis, youwanted to run away.
You wanted to be out of thesituation because it was not
what you had anticipated yourson or your life to look like.
And you obviously have done acomplete 180 on this, right?
You are so immersed in thistopic.
(18:07):
How did that happen for you?
SPEAKER_00 (18:09):
Mine was a little bit more of a spiritual level,
connecting with change.
So I'll give you a littlebackground about my story.
I've been on my own since I was16.
I didn't really know my daduntil later on in my late 20s.
He's in my life now, been fullyfocused and immersed.
And my mom suffered fromschizophrenia and depression.
She actually was homeless.
(18:30):
She kicked me out at 16, andthen she just started being on
the streets because of herpsychosis.
So I had to learn how to liveoff of the streets.
This was well before Shane wasin a picture.
Shane came into the picturewhile I was trying to numb the
pain of life with more life, ifthat makes sense.
But the problem was I was alwaysgetting in a rat race.
(18:54):
I will always end up alone,financially broke, about to be
homeless myself, which I was incertain situations.
It was not until I fell to myknees and was crying and weeping
and saying, I can't do thisanymore, God.
I need help.
And this is a true story.
My son Shane was in his room,which was literally a hundred
(19:15):
feet away from me, and hecouldn't have heard because he
had cartoons on.
And he came running out and hehugged me.
And what I realized in thatmoment was that God was gracious
enough to give me a piece of himin an aesthetic form, actual
tangible form that I can hold.
So it was my best interest tolearn from Shane.
(19:39):
So I started to really unpackall of the callousness that went
to my heart, which meansreinventing myself, which means
sitting down and saying, okay,I've been doing fatherhood
wrong.
I've been doing life wrong.
Let me learn through my son.
So Shane began to teach me howto love people for who they are,
regardless of how they treatyou, how to properly interact
(20:01):
with those who don't knowexactly who you are or how you
present and want to learn more.
So Shane, he broke down a lot ofthese walls and he taught me,
but only because I asked for it.
I asked for it from my belief inmy creator.
And in my heart, truly 100%, heblessed me with a tangible
(20:21):
version of that, and that isthrough my son Shane.
SPEAKER_01 (20:24):
That's an amazing journey, and we are so fortunate
that Shane had that impact onyou, and so fortunate for Shane,
really, and because he hasreally allowed you to do some of
this work.
Now, parenting an autistic childmay look different, and in doing
so and working withprofessionals who work in an
autistic environment, what aresome of the fears that parents
(20:44):
have about their childrengetting diagnosed and what
stigmas exist?
SPEAKER_03 (20:49):
First of all, I want to say, do you see why I think I
have the perfect partner inthis?
SPEAKER_01 (20:54):
I really do.
I see it.
It's loud and clear.
SPEAKER_03 (20:56):
Oh, man.
It came through for the firsttime I saw his post.
So it just makes me tear upevery time I hear his story.
So I think lack of understandingis the first thing that we say
parents face.
It's fear.
There's a ton of fear out there.
There's a lot of people who arevery judgmental.
There are a lot of people whothink that they have the answer.
(21:17):
They can fix your child, theycan fix your parenting.
So it becomes very isolatingbecause you don't want to be
told all the time all the thingsyou're doing wrong.
Because the bottom line isyou're probably not doing
anything wrong.
You're doing the best you can.
And there's a lot of people outthere who are very quick to say,
(21:38):
oh, well, what you're doing iswrong.
You made this happen.
It's how you're raising yourchild, it's what you're doing
with your child.
That's what they're faced with.
So it causes people to retreatand just try to survive.
Even amongst professionals, Ithink we're beginning to see the
(21:59):
signs of people learning theindividual characteristics of
people with autism, not tryingto fit them into a box.
But there still is a lot ofthat.
If your child is autistic, do A,B, and C.
If your child is autistic, thisis the device, this is the
method, this is the behaviorprogram.
(22:21):
And that just doesn't work foreveryone.
It may work for some, but notfor all.
And we really have to be veryopen to the fact that these kids
are individuals.
When Zach was younger, I found afriend whose son also had
autism.
The boys were very similar andalso very different.
(22:44):
And we started meeting once aweek while the boys were in
school for what we calledtherapy.
We met at Panera, we had a cupof coffee, it was therapy
because she was the only personthat I could be 100% honest
with.
And that included members of myfamily.
But with her, we could actuallysay, This is what I heard, this
(23:08):
is what's upsetting me, this iswhat happened.
And hey, guess what?
This happened and it was great.
And you can't always get thatunderstanding.
And to Jameel says, you know,talk to people, meet someone
who's has autism, get to knowthem.
It's a gift.
Well, you need to be able tocelebrate with people who
(23:28):
understand.
And for people who don'tunderstand, listen, try to
celebrate with a parent becauseit's hard.
It's a very, very hard journey.
And we need people not to judge,not to always offer a solution.
Because there isn't a solution,and we don't need a solution.
We're not looking to fix ourkids.
(23:50):
And that goes for all our kids.
My two neurotypical kids havegiven me as much of a challenge
as my son Zach, and I wouldn'tchange any of them.
SPEAKER_00 (23:58):
You know what, Cheryl, to hear that, I think
people take that too lightly.
Like we don't need to fix ourchildren.
So, with respect to opinions,because a lot of people have
developed pain from this.
And in my personal opinion, onlyminds, Jamil Owens, not a
representative of CHOP, butJamil Owens, a father, a parent,
(24:19):
I think it's because theyhaven't really relinquished
their hold on life, meaningtheir control of what they want
their life to be like.
They haven't just let it go andsay, okay, I'm looking at this
from the wrong lens.
SPEAKER_03 (24:32):
I just wanted to add that I want to really respect
the fact that there are peoplewho have a much harder situation
when it comes to the levels ofautism.
When you're taking care ofsomebody who is profoundly
autistic, it is a very differentsituation from somebody who is
level one.
(24:53):
And we respect that and weunderstand that.
And for those parents out thereand caregivers, please
understand that we know that itis a difficult path.
We get it.
Our real thing is that peoplelooking in from the outside
don't judge so quickly.
Support, listen, hear.
(25:14):
Don't tell a person how to fixthe situation.
Understand that it is everyperson is facing what their
reality is.
And we have to respect theirreality and help them in their
reality, not to try to change itor tell them how to change it.
SPEAKER_01 (25:33):
Yeah, thank you for adding that.
I think that's a very importantidea for us to keep in mind.
Jameel, it sounds like yourexperience as a parent to an
autistic child has carved thepath to where you are now the
CEO of Awesomeness and thecoordinator at the Center for
Autism Research.
Can you tell us about the workyou do at these two entities and
(25:54):
how it is designed to make apositive and significant impact
in the autistic space?
SPEAKER_00 (25:59):
Yeah, so I'll start real quick just with the family
relations coordinator at theCenter for Autism Research at
CHOP.
My position was never therebefore.
I was given the opportunity topresent while I was working at
CHOP in security to their LENprogram, which is Leadership,
Education, and Neurodiversity.
It's a national cohort that'sfunded by the government.
(26:23):
I was the first father toactually present in their entire
cohort.
So the entire program that hasbeen well established years
before, I was the first fatherthat was offered because of all
the work I was doing since 2014.
After that presentation, one ofthe directors came up to me and
she said, I think we have aposition for you if you're
(26:44):
interested.
And I said, Sure.
So I met with all of theinfrastructure positions within
the center where I work at, myco-workers, and there was one
issue (26:54):
my education.
So my education background, Ididn't have a degree in
anything.
And I remember I was talking ona phone because my wife now was
actually, she was giving birthto our now three-year-old son.
And I was in the hospitaltalking to them, and I was like,
listen, I don't have the degree,but I can do the job.
And they said, okay, well, letus talk.
(27:16):
We'll get back to you in twoweeks.
And they got back to me in twoweeks and they took away that
education.
And I interviewed some more andI came into that position
swinging, knowing thateverything that I've established
for myself, now I get to do whatI always wanted to do, and that
was to give to everybody else.
So that's that portion, that'swhere I'm at currently right
(27:36):
now.
SPEAKER_01 (27:37):
I mean, yeah, you're obviously a subject matter
expert.
SPEAKER_00 (27:40):
I wouldn't say expert, but you know, you're a
lot closer than I am.
SPEAKER_01 (27:45):
I mean, you and Cheryl both are subject matter
experts through livedexperience.
And that is something that wefocus on a lot at Genesis
Women's Shelter and Support,which is the founder of the
conference, is that survivorsare the experts, right?
So survivors of gender-basedviolence, domestic violence are
the experts in what thatexperience is like.
(28:05):
As parents of children who haveautism, in a way, you are a
lived experience expert becauseyou are coming up around it
alongside, you're learning withthem what this life is going to
be like.
SPEAKER_00 (28:18):
Yeah.
I mean, in that form, yes, wedefinitely are.
And me and Cheryl, we encourageparents and communities in which
we speak to, and even autisticindividuals, self-advocates,
that they are the expert.
They have a voice and toactually use it.
And that point, yes, definitely100%.
I've been blessed to be able tobe that.
I guess once again, relying onimperfect statistics and things
(28:41):
in society.
I don't have a PhD or anythingto back my name, but we don't
need that.
You know, we don't need thatexactly.
Awesomeness Incorporated is anonline platform that is still
being developed.
Shout out to Cheryl Son Josh,who is a website direct program
developer with his own companyto help me form this website,
(29:02):
but it's a one-stop shop foranyone within the entire nation
to actually come on to getresources in their specific
neighborhood.
What makes this website a littlebit different is that it really
relies on the community to vetout resources for other moms,
other awesome dads, otherawesome families, in order for
(29:24):
them to get the services inwhich they're looking for.
So we're still developing.
It is together, it is up.
You can log on right now and seesome of the information.
We also have some podcasts fromlocal moms from all around the
Philadelphia tri state area,dads as well, too, who are just
making a difference one voice ata time.
(29:44):
So that's really what theplatform is going to shoot off a
little bit more this year as I'mrearranging my work schedule.
But yeah, that's enough aboutme.
SPEAKER_01 (29:54):
It's fascinating and amazing, and it sounds like
somehow you found your purposein life very serendipitously.
Now, Cheryl, like Jameel, itsounds like your personal
experiences have motivated youto start OT, A-U-T-T, as it's
spelled.
What is OT about and who is thetraining geared towards?
What does the training entail?
(30:14):
Just tell us so much more.
SPEAKER_03 (30:16):
So, as I said earlier, when I was approached
to review the training programfor traffic stops for law
enforcement officers, when theywere stopping somebody with
autism, I saw there was a realneed for more education.
It was a program that wasdeveloped with the best of
intentions, but by people whodid not know what autism really
(30:41):
was.
And fortunately, when Iapproached Jamil and we started
working on the program, we wereable to take our program to the
municipal police forPennsylvania and make it an
official program for them tohave for their continuing
(31:01):
education.
And at the same time, it gave usthe platform to go and teach law
enforcement officers aboutautism.
And we weren't teachingstatistics and medical
diagnoses.
We were teaching what it was tobe dealing with an individual
who has autism, to beinteracting with an individual.
(31:23):
What were the maincharacteristics?
Body language, eye contact,communication.
And we tried to make it reallyattainable, real life-based,
stories that were relevant, givescenarios that were relevant,
talk, communication,conversation with law
(31:43):
enforcement officers.
And that then propelled usforward to develop a similar
training for firefighters andfor EMT and for juvenile
probation officers.
And then we started training thelawyers at the Attorney
General's office.
So we've been very fortunatethat we've been able to approach
(32:05):
people in a lot of differentparts of the first responder
community.
And then what we've done is alsotake that information back to
the community.
So instead of saying, hey, thisis all on the police, this is
all on the firefighters, this isall their responsibility, we go
to the community and we say,hey, this is your responsibility
(32:27):
too.
If we're going to bridge thisgap, we need both sides coming
together.
We need the community.
Go meet your law enforcementofficers.
Go see what a firefighter isgoing to be wearing when they
come into your house.
If they have to come into yourhouse.
(33:00):
Have that ready.
So we can go back to thecommunity and say, hey, listen,
we're teaching the lawenforcement officers, and we're
also teaching you.
And it takes responsibility onboth sides to come together to
make these interactions morelikely to succeed.
And we always say to them, youdon't want to be on the news.
(33:22):
That's our goal.
We want to stop anything fromgoing wrong before it gets to
the news.
And we can do that if we educateeach other, if we talk to each
other, if we communicate witheach other, and most of all, if
we work with each other.
So Ought is really focused onproviding that training.
And then we're also trying towork with legislation to share
(33:47):
what is out there, what is beingdone.
Right now, obviously, becausewe're in Pennsylvania, we're
dealing mostly withPennsylvania, but we're hoping
to see some legislation thatcould become national.
And while we're working inPennsylvania, we're using
examples of bills and laws andprograms that have been used in
(34:09):
other states and successfullyused.
And we're trying to get thatattention to make sure that we
have the best opportunities outthere to improve those
relationships.
SPEAKER_01 (34:21):
Thank you for that.
And along those lines, what aresome autistic-related behaviors
that often go unrecognized ormisinterpreted?
And how do autistic childrentypically embrace the law
enforcement concept?
SPEAKER_03 (34:33):
An example that I didn't learn for a long time.
I talk about eye contact.
Difficulty with eye contact isvery common amongst people with
autism.
And Zach is 26 now.
For the first 20 years of hislife, I would say to him, Zach,
look me in the eye.
(34:55):
I'm talking to you.
You're talking to me.
Look me in the eye.
It took me a long time to reallyunderstand that eye contact was
incredibly difficult for him,and it is for many people with
autism.
So when we look at policetraining, police officers are
very often taught if somebodydoesn't look you in the eye,
(35:18):
there's a reason.
They're being deviant, perhapsthey're on drugs, they might be
drunk.
They don't want to have thisconversation with you.
So if police officers are taughtthat, and people with autism
have difficulty making eyecontact, you can already see a
huge way where theseinteractions can go badly.
(35:43):
So that was one area that Ilearned that we really focus on
in training.
There's a lot of body languageissues that you can see causing
problems.
Stimming is very common amongstpeople with autism.
Stimming is moving your body.
It could be blinking, it couldbe using your hand to do
(36:04):
something, it can beheadbanging, and it can be
moving.
It can play out in a whole rangeof ways.
Police officers, obviously, whenthey're questioning you, want
you to stand still.
If you start moving erratically,that could cause a problem.
(36:24):
So we're teaching them aboutthat.
Communication is a huge one.
When somebody hears a questionand can't answer it or answers
something different from whatyou ask them, that can be
misinterpreted really easily.
But again, communication issuesare very common amongst people
(36:47):
with autism.
So we are trying to address allof those issues so that a law
enforcement officer, a firstresponder, when they see some of
those more obvious behaviors,they can all of a sudden say,
Oh, wait a second.
Maybe I'm dealing with autismhere, not deviant behavior, not
(37:10):
avoidance.
SPEAKER_01 (37:11):
What are some of the ways that a law enforcement
officer or other professionalcan determine if they are in
fact speaking with someone whomay have autism or something
that isn't deviant, beingdeviant behavior or dangerous
behavior?
SPEAKER_00 (37:27):
It's simple.
Just ask.
So I think we're in some aspectof law enforcement and
communication, we'reoverthinking it.
We're making it too hard.
You know, officer approaches avehicle, how you doing, sir or
ma'am?
Um officer's, you know, Owens,do you know why I'm stopping
you?
As easy as it is to ask, do youknow what I'm stopping you?
(37:48):
And can I see licenseregistration and proof and
insurance?
Ask it.
Is there anybody in a car or doyou yourself have any
neurological conditions I needto be aware of?
Are you neurodiverse by anychances?
No?
Okay, great.
You just check the box.
I think people associate autismand the conversations around it
to be so taboo, so tabooed tothe point where we can advertise
(38:10):
and talk about sex openly,right?
But we can't talk aboutneurodiversity because that
implies that someone is toodifferent or ew, I don't want to
associate with that person.
So I think the best answer isjust ask.
As officers are out in the fieldwhere the real training is.
I learned this in my experience.
Uh, get into a habit to askthese questions when approaching
(38:31):
a vehicle, or if it's not afelony stop, the vehicle felony
stop, you asking an individualout in the street.
Is there anything you would liketo tell me?
Any conditions I need to beaware of?
Officers are doing this duringpack downs.
Do you have any weapons on you?
Is there anything else I need toknow before I continue to search
you?
So put that in your rotation ofquestions, and I think that
alleviates a lot ofmisconceptions and a lot of
(38:52):
miscommunication.
SPEAKER_03 (38:54):
And on the flip side, as a person, if you're
being stopped, we've got to becomfortable saying, I have
autism.
As we work to bridge this gapbetween law enforcement, to
build the trust between the twocommunities, and that's really
what we need to do, becausethere is mistrust.
So as we work so hard to buildthe trust between the two
(39:17):
communities, we have to havepeople with autism meeting
halfway and being okay saying, Ihave autism, I have trouble
looking you in the eye, or Ineed to move around.
I can't sit still, I'm going tostem.
And we're trying, there arecommunication devices, there are
things like blue envelopes,information sheets, emergency
(39:40):
contact information.
Some states have notations onthe licenses that allow that
kind of communication to happenmore easily.
But both sides have to bewilling to talk and to
communicate and to shareinformation.
That's what's going to help inthe long run.
We have to take away the stigmaand the fear, and that's a
(40:04):
process.
I'm not saying that's easy, butwe have to work towards making
it where I can say, I haveautism, and the police officer
recognizes and respects that.
SPEAKER_01 (40:21):
Yeah, and I think that's a process too.
It's a huge process.
Getting to the point of feelinglike you wouldn't be targeted
for that.
We live in a somewhat unstableenvironment right now.
SPEAKER_03 (40:34):
We're not there yet.
No.
SPEAKER_01 (40:35):
Yeah, and I appreciate you bringing that up
and acknowledging it that it'sgoing to take more time.
And it's going to take all of usto kind of get there.
Now, I'd like to understand alittle bit more about the
behaviors that could gounrecognized or misinterpreted
by law enforcement, as well ashow open are law enforcement and
(41:01):
other professionals to learningabout this type of response and
also practicing what they learnin training?
SPEAKER_03 (41:10):
We have really met so many law enforcement officers
and first responders who want toknow.
First of all, many of them willsay to us, oh yes, my nephew, my
best friend's son, my, you know,they know someone.
We're one in 31 now.
(41:30):
The numbers of people withautism continue to grow.
A lot of people now know whatautism is in general.
Not specifically, they may nothave ever met someone, but the
words are out there.
The term is out there.
So there's a base awareness.
And most of the law enforcementofficers we meet, they want to
(41:53):
know.
They don't want to be on thenews.
They don't want to hurt someone,but they don't know what they
don't know.
And just like I didn'tunderstand the eye contact, and
I have a child with autism, howwould they know?
So we have found that they arevery open to learning and to
(42:15):
trying to do better and to bemore open to this learning.
So from that aspect, it's beenvery positive.
Now, have I met officers in all50 states?
I haven't.
But I do want to believe thatwhen you approach someone and
you say to them, let's worktogether, and you don't say to
(42:36):
them, you're wrong, you'remessing up, you don't get it,
you're not going to alienatethem.
If we can work together and say,hey, this is just to help you.
It's to help our community andit's to help your community, and
it's to bring us both togetheras one community, you're going
to have a positive reaction mostof the time.
(42:58):
Now, are there going to beexceptions?
Probably.
There's exceptions to everyrule.
But we have generally found thatpeople are very much looking to
do the right thing.
SPEAKER_00 (43:09):
I think we definitely want to take a
neutral response to kind ofresponding to some of the
characteristics because we wantto respect clinicians, right?
Doctors who study this, that'stheir field.
We're not that, but we do havethe lived experience.
So I'll speak on some of thecharacteristics that I've
experienced with Shane, whichwas hand flapping, the absence
(43:32):
of eye contact, knowing when hisname is called.
That was another issue thatShane actually had when I would
call his name.
He wouldn't respond to my calls.
Flapping of the hands, walkingon tippy toes, staring is
another part of stemming aswell.
More common in some of the youngadults and adults who are
(43:53):
autistic currently, right now,today.
But also, I want to say amaternal instinct is the best
identifier among anything.
What I mean by that is that youknow there's something going on
with their child, or you pick upon certain things.
It may be a sniffle one day fromyour child, they may be extra
clingy to you, and you knowthat, hey, my child is about to
(44:16):
get sick.
I know it's coming.
I would encourage parents toexplore what they are actually
feeling with their pediatrician,right?
You should be able to be openwith your pediatrician and to
really address your concernswithout sounding like a crazy
mad woman.
See, Cheryl, I did say it.
But they should respect.
SPEAKER_03 (44:36):
Don't just call me a crazy mad woman.
SPEAKER_01 (44:41):
Okay, guys, that's a different episode.
Okay, we can't go there today.
SPEAKER_00 (44:47):
Or really, I think if you know there's something
going on with your child, Ithink you should really address
that with your pediatrician.
If it is an older child, I thinkyou should address it with their
doctor.
If it is a young adult goinginto that transitional stage, I
think you should haveconversations with your child to
say, hey, I noticed a couplethings you're doing.
(45:07):
Are you okay?
Is there anything else maybeyou're experiencing that you
don't know what's going on?
Maybe I could talk to you aboutor find out more information.
I think that's the best thing.
We pay too much attention tomilestones.
And milestones don't work forboth neurotypical and
neurodiverse children.
It's a great structure.
It's great to sit there and belike, okay, they should be doing
(45:29):
this and doing this.
But I know people, kids who hada girl who started walking, you
know, two months in versussomeone that's around age two.
So it can really vary foreverybody.
So that's really my suggestion.
SPEAKER_01 (45:43):
Those points are very well taken.
Let's just touch back on theinteractions with law
enforcement and others again.
I want to understand what lawenforcement or other
professionals versus responderscould do to de-escalate
situations that spin out ofcontrol.
SPEAKER_03 (46:01):
It's taking a minute to analyze an individual.
Sometimes just stepping back andlooking at the situation and
thinking, okay, what if mytraining would explain some of
these behaviors that I'm seeing?
That can diffuse a situation andjust give everybody a minute to
(46:25):
breathe and say, oh, wait asecond.
So they're not looking me in theeye, or they keep flapping their
hands.
Wait, I've heard that.
I know what that is.
That is autism, or they'restaring at me.
Wait a second, I heard maybethere's another way to
communicate.
Maybe I need to pull out myphone and type what I'm asking.
(46:46):
Maybe I need to ask them, do youhave something written down that
you'll be able to use to show mewhat is going on?
Is there another communicationmethod?
Or is there somebody I can talkto?
An emergency contact?
Or is if a law enforcementofficer sees there's some other
(47:07):
person at the scene, hey, canyou tell me what's going on?
Can you explain the situation?
If you can just take those fewseconds and think about what
else the situation couldpossibly be, and not jump to the
worst possible assumption.
(47:28):
They're not trying to run awayfrom me.
They just keep moving around.
Why is that?
And that would be our firstthing.
Stop and think.
Now, of course, we recognizethat law enforcement has to make
sure that they're safe, thesituation is safe, the person is
safe, and they've got to bemaking a ton of decisions very
(47:51):
quickly.
And we get that and we respectthat.
So sometimes they're not able totake that time, but very often
they can.
They can step back, they canlook at it for a second, they
can get information from theperson who sent them to the
scene.
Get all that communicationinformation before you get
(48:11):
there.
So that's what we recommend.
Get as much information as youcan and really analyze the scene
from the individual perspective.
SPEAKER_01 (48:20):
Yeah, that's excellent advice, and I
appreciate all of that feedback.
I want to touch on before I letyou go, talking about this
subject within the context ofdomestic violence.
What would be some of theobstacles for mothers or
families or what vulnerabilitiesexist when there's a child with
autism in a family that's alsoexperiencing domestic violence?
(48:44):
What advice would you have formothers to make the right
decisions both for their familyand for their child?
SPEAKER_03 (48:52):
One of the things that is really difficult for
most people with autism isunpredictability.
And these situations they becomevery unpredictable if you have
to get out of a place veryquickly, if you're going
somewhere that the child is notfamiliar with, there can be a
lot of unpredictability.
So you can anticipate that'sgoing to be very difficult on
(49:15):
somebody with autism.
So again, what we would stressis for open conversation, you've
got to, when you arrivesomewhere, let's say you have a
child who has autism, and nowyou're bringing them into a very
unpredictable situation.
Be open, explain to thatprovider, to the place you're
(49:37):
going, hey, my child has autism.
He or she may need a quietplace.
Is there a room we can go to ifthey start to have a sensory
overload?
One of the things we recommendall the time for all parents of
individuals with autism is packa bag with the things that are
(49:58):
familiar to your child, whetherit's a lovey, a toy they really
rely on, a blanket they rely on,a certain food.
Have that.
So if you have to move quickly,you can grab that bag and it's
got those items with you a setof headphones, a communication
device, and give them thatcomfort in an unpredictable
(50:24):
space.
At least they have that therefor them.
And it can be very basic things,some fidget spinners, something
that makes them comfortable, butalso explain the situation in
your safe place wherever you getto, so that the people around
you can support you.
Don't hide it.
(50:44):
Because you are going to needsupport.
And if you're going into ashelter or into some kind of
protective home, that's whatthey're there to do.
They're there to support you.
Take that support.
Don't hide the autism.
It's nothing to be ashamed of.
Let them support you.
SPEAKER_01 (51:00):
Those are really great points for reflection and
a good call to action foreverybody, really.
Before I let you go, there's alot of research out there that
informs us of the lack ofawareness, training, funding,
and resources surroundingintellectual or developmental
disabilities.
What would each of you say needsto be done on a legislative
level regarding autism?
SPEAKER_03 (51:22):
I would love to see mandated training.
It needs to be updatedconstantly.
As we know, it needs to berepeated, it needs to be
updated, it needs to be shared,it needs to be taught by people
who understand it.
You can't just put anyone infront of a room reading a
document.
It needs to be taught by peoplewho can have a conversation
(51:46):
about what really it is to beliving with autism.
There needs to be more funding.
There needs to be more support.
We need to change the tone ofthe conversation.
We need to bridge gaps.
There's too much judgment outthere.
We need to listen to each other.
That's with everything, youknow, throughout this country.
(52:08):
We need to listen and be able totalk to each other.
But with autism, let's behonest, let's be open, let's
support, and let's stop judging.
SPEAKER_01 (52:18):
Yeah, I completely agree with what you're saying
for this reason and so manyothers.
And the journey with autismspectrum disorder is so new.
I mean, to your point back 24years ago, when your son was not
even actually diagnosed withautism at that time, and to now,
and I mean, even the 10 years inbetween your son's lack of
(52:41):
diagnosis and Jamil's son'sactual diagnosis, which they
occurred just about 10 yearsapart, if I remember the ages
correctly, there was a leap.
And it took complete Yeah, ittook time.
And I think this is again, it'sstill such a new journey for all
of us to really understand whatit means to be autistic and live
(53:01):
as a person with autism, that weneed more time, we need a lot
more resources, and wedefinitely need some
legislation.
Jamil, you get the last word.
SPEAKER_00 (53:09):
The reason why me and Cheryl are doing these
trainings because we're bridgingthat gap on law enforcement
first responder side, but we'realso having parents step up and
being like, hey, if they can beadvocates like this and do this
amazing stuff, I can too.
And now we're building ournetworks of villages and
advocates to help support thisentire population.
SPEAKER_03 (53:30):
And their caregivers.
We don't want to forget aboutthe parents.
SPEAKER_01 (53:33):
I really enjoyed learning from both of you.
Thank you so much for being hereand for the work that you do.
SPEAKER_03 (53:38):
Thank you.
SPEAKER_01 (53:40):
Thanks so much for listening.
Until next time, stay safe.
The 21st Annual Conference onCrimes Against Women will be
held May 18th through the 21st,2026, in Dallas, Texas.
Learn more at conferencecaw.organd be the first to know about
all conference details, as wellas the latest on the Institute
(54:02):
for Coordinated CommunityResponse, Annual Conference
Summit, Beyond the Bounds, andthe National Training Center on
Crimes Against Women.
When you follow us on socialmedia at NationalCCAW,
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