Children of Color with ASD

>> HI, EVERYONE, AND WELCOME TO "BASIC BLACK."

SOME OF YOU ARE JOINING US ON OUR BROADCAST AND OTHERS OF YOU ARE JOINING US ON OUR DIGITAL PLATFORMS.

I'’M KRYSTAL HAYNES, YOUR HOST FOR THE EVENING.

TONIGHT, CHILDREN OF COLOR LIVING WITH ASD.

A RECENT REPORT FROM THE CDC SAW A RISE IN THE NUMBER OF CHILDREN OF COLOR BEING DIAGNOSED WITH AUTISM SPECTRUM DISORDER OR ASD.

REASONS FOR THE INCREASE VERY FROM THE PANDEMIC TO MORE AWARENESS AND DECREASED STIGMA IN COMMUNITIES OF COLOR, BUT WHILE THIS MAY BE GOOD NEWS, HISTORICALLY, CHILDREN OF COLOR, IN PARTICULAR BLACK CHILDREN, HAVE BEEN DIAGNOSED AT LATER AGES THAN WHITE CHILDREN, DELAYING THEIR DEVELOPMENT, AND FOR PARENTS AND FAMILIES OF COLOR WITH CHILDREN WITH ASD SEEKING RESOURCES AND FINDING ANSWERS CAN BE AN ENORMOUS CHALLENGE.

JOINING US THIS EVENING TO DISCUSS IS DR. KAREN SPENCER, AN ASSISTANT IN THE DEPARTMENT OF NEUROLOGY AT BOSTON CHILDREN'’S HOSPITAL.

CYNTHIA LENE IS THE FOUNDER OF THE BLACK AUTISM COALITION AND A MOTHER OF TWO KIDS WITH ASD.

JAY WILSON IS A DOCTORAL STUDENT IN CLINICAL PSYCHOLOGY AT BOSTON UNIVERSITY'’S CENTER FOR RESEARCH EXCELLENCE HOUR CARE.

-- OR CARE.

WELCOME TO YOU ALL.

>> THANK.

>> I WANT TO START WITH THE CDC DATA.

I WILL START WITH YOU, DR. SPENCER.

THIS IS BEING DESCRIBED AS SORT OF NEW INFORMATION, WHICH I'’M SURE IS NOT NEW TO ANYONE HERE ON THIS PANEL.

>> SURE.

BASICALLY, THE CDC REPORT, AS MANY KNOW, SHOWS A 30% INCREASE IN THE NUMBER OF CHILDREN WITH AUTISM, CHILDREN WHO ARE DIAGNOSED.

THESE ARE LOOKING AT EIGHT-YEAR-OLD CHILDREN.

WE ARE LOOKING AT A COUPLE YEARS BEFOREHAND PEOPLE BEING DIAGNOSED WITH AUTISM SEEING THIS INCREASE.

MOST PEOPLE SEE THIS AS A VERY GOOD THING THAT THIS INCREASE HAS HAPPENED.

THIS REFLECTS LIGHTLY AND INCREASED AWARENESS ABOUT AUTISM IN GENERAL, INCREASE ACCESS TO CLINICIANS WHO DIAGNOSED AUTISM AS WELL AS CLOSING SOME OF THOSE DISPARITIES IN TERMS OF HOW LATE CHILDREN OF COLOR, PARTICULARLY BLACK CHILDREN, ARE DIAGNOSED COMPARED WITH WHITE CHILDREN.

THERE HAS ALSO BEEN INCREASED AWARENESS AROUND PEDIATRICIANS REFERRING EARLIER TO SPECIALISTS WHO SPECIALIZE IN DIAGNOSING CHILDREN WITH AUTISM.

ALL THOSE DOCTORS TOGETHER AS WELL AS NOT TO MENTION THE PUBLIC HEALTH EDUCATION AND THINGS LIKE THAT THAT HAS GONE ON, AND AWARENESS CAMPAIGNS, SO I THINK THOSE FACTORS TOGETHER HAS LED TO A SIGNIFICANT INCREASE, WHICH I THINK IS A TRUE SUCCESS STORY IN TERMS OF BEING ABLE TO IDENTIFY AND TREAT KIDS EARLIER.

>> IN YOUR WORK, WERE YOU SURPRISED BY THE DATA THAT CAME OUT?

>> I WAS NOT SURPRISED.

I HAVE DEFINITELY HEARD A LOT OF ANECDOTES OF PARTICIPANTS WHO HAVE BEEN INVOLVED IN OUR RESEARCH TALKING ABOUT GETTING EARLIER DIAGNOSES AND TALKING MORE WITH FRIENDS AND FAMILY AND GETTING BETTER FEEDBACK FROM THEM.

I DO THINK THAT THERE'’S ANOTHER FRONTIER WITH RESEARCH, AND I THINK BLACK AND BROWN COMMUNITIES HAVE A REASON TO DISTRUST SOMETIMES RESEARCH FACILITIES.

WE ALL KNOW ABOUT THE BLACK MEN'’S SYPHILIS STUDY AND OTHER ABUSES THAT HAVE HAPPENED BETWEEN THESE COMMUNITIES.

ON THE OTHER OF THAT, THAT MEANS THAT A LOT OF BLACK AND BROWN CHILDREN ARE INVOLVED IN THE RESEARCH THAT IS TELLING US ABOUT WHY THERE ARE DIFFERENT LANGUAGE OUTCOMES FOR PEOPLE WITH AUTISM.

THAT IS TELLING US ABOUT GENETIC DIFFERENCES, NEUROLOGICAL DIFFERENCES, AND I THINK THERE NEEDS TO BE THIS POSITIVE FEEDBACK LOOP WHERE WE ARE ESTABLISHING TRUST WITH THESE COMMUNITIES AND THEN WE ARE GETTING THE DATA AND FEEDBACK BACK TO THESE COMMUNITIES SO THAT WE ARE ACTUALLY SERVING THEM AND HELPING THEM UNDERSTAND THEIR CHILDREN.

>> YOU KNOW, WHEN YOU HEAR THERE'’S A RISE, ARE YOU SEEING A RISE IN THE NUMBER OF FAMILIES THAT YOU ARE TOUCHING?

>> I DO.

THE GOOD THING IS NOW IS THE EDUCATION POINT BECAUSE A LOT OF EMILY ARE EDUCATED BY OTHER ADVOCATES THAT'’S OUT THERE, LIKE MYSELF, LETTING ME KNOW IT'’S OK AND THEY ARE TAKING THE STEP OF GETTING THEIR CHILDREN DIAGNOSED, WHICH IS A VERY IMPORTANT THING.

YOU HAVE PEOPLE LIKE MYSELF SAYING, HEY, I DO HAVE TWO CHILDREN WITH AUTISM.

IT IS OK AND IT'’S NOT THE END OF THE WORLD.

IT IS JUST GETTING THE CHILD THE RESOURCES THEY NEED SO THEY CAN CONTINUE TO LIVE THE LIFE WE WANTED THEM TO.

A LOT OF US HAVE FAMILIES AND ONCE THEY GET THE DIAGNOSIS, THEY THINK OF IS OVER FOR THEM, AND THAT'’S WHY THEY DON'’T WANT NOBODY AROUND THEM TO KNOW, BUT AS PARENTS LIKE MYSELF WERE COMING OUT, WE WOULD SAY HEY, LISTEN, MY SON CAN BE A GREAT BASKETBALL PLAYER, YOU KNOW, IF I CONTINUE TO GET HIM THE HELP THAT HE NEEDS.

I WORK WITH A LOT OF THE BLACK AND BROWN COMMUNITIES AND A LOT OF THE HAITIANS BECAUSE I'’M HAITIAN MYSELF.

CULTURALLY, ANYBODY WITH A DISABILITY IS LIKE A DISADVANTAGE TO THE COMMUNITY.

THEY WANT TO PUT YOU ASIDE.

>> I SAW YOU SORT OF EMPHATICALLY AGREE WITH WHAT JAY WAS SAYING.

>> I DEFINITELY THINK THAT BECAUSE ROXBURY IS MAJORITY BLACK AND LATINX, WE HAVE HANDS-ON EXPERIENCES WITH FAMILIES GETTING DIAGNOSIS, AND IT IS HELPING US EDUCATE FAMILIES ABOUT WHAT THE SIGNS ARE AND DIRECTING THEM TO THE APPROPRIATE ASSESSMENTS TO RECEIVE THE DIAGNOSES BECAUSE WE ARE HAVING HANDS-ON EXPERIENCES.

>> TO FOLLOW UP WITH THAT, WE KNOW THAT STIGMA, ESPECIALLY IN BLACK AND BROWN COMMUNITIES FOR ANYONE WITH A DISABILITY, CAN BE A BARRIER TO TREATMENT, CAN BE A BARRIER TO DIAGNOSES, AND THERE CAN BE SHAME THAT COMES WITH THAT.

TALK TO ME ABOUT HOW THAT SORT OF JIVES WITH THIS DATA WE ARE SEEING OUT OF THE CDC.

WE ARE SEEING THAT PEOPLE ARE MORE WILLING TO REPORT IT ACCORDING TO THE FEDERAL REPORT, BUT THERE HAS TO BE MORE FOLKS THAT ARE NOT REPORTING IT, RIGHT?

>> YEAH.

I THINK JAY SAID SOMETHING THAT WAS INCREDIBLE WITH ESTABLISHING RELATIONSHIPS.

AS AN EI CLINICIAN, I'’M WORKING HANDS-ON WITH THE KIDS AND THEIR FAMILIES TO ESTABLISH RELATIONSHIPS AND BUILD TRUST IN ORDER TO LET THEM KNOW, I'’M VALIDATING YOUR FEARS AND THE STIGMAS AROUND AUTISM BUT ALSO LETTING YOU KNOW THAT A DIAGNOSIS CAN OPEN SO MANY DOORS THAT WILL ONLY STRENGTHEN YOUR CHILD, AND EARLY INTERVENTION IS A STRENGTH-BASED PROGRAM.

YOU JUST MENTIONED THAT YOUR SON IS AN AMAZING BASKETBALL PLAYER, AND HE IS MORE THAN HIS DIAGNOSIS WORKS I KNOW THERE ARE SO FEW SUPPORT GROUPS FOR FAMILIES OF COLOR DEALING OR LIVING WITH KIDS WHO HAVE ASD, DEALING WITH TRYING TO GET TREATMENTS AND SERVICES AND DIAGNOSES TO BEGIN WITH.

TALK TO ME ABOUT HOW YOU TALK FAMILIES THROUGH, WALK THEM THROUGH THIS STIGMA PIECE.

>> IT STARTED FOR ME BACK IN 2020 WHEN THE PANDEMIC STARTED.

A LOT OF FAMILIES DID NOT KNOW WHERE TO GO.

YOU HAVE THE KIDS THAT WERE IN THE HOUSEHOLD AND DID NOT EVEN KNOW HOW TO INTERACT WITH THEIR KIDS.

WE STARTED A SUPPORT GROUP OVER ZOOM, AND THAT'’S HOW IT ALL STARTED FOR US.

EMILY'’S WERE JUST COMING IN, AND WE WERE JUST SHARING -- FAMILIES WERE JUST COMING IN, AND WE WERE JUST SHARING ABOUT YOUR CHILDREN, MY SON BROKE MY IPAD, AND WE ARE LIKE ONE IPAD?

WE ARE INTO, LIKE, THREE OR TWO OR FOUR.

THERE WERE MOTHERS COMING IN WITH TEARS IN THEIR EYES BECAUSE OF WHAT WAS GOING ON WITH THEIR HOME.

ONE THING THAT HAD HAPPENED DURING THE PANDEMIC, THE FATHER'’S, BECAUSE OF THE FACT THAT WHEN WE ARE ALL IN THE ROOM, THEY DON'’T REALLY INTERACT WITH EACH OTHER, BUT WHEN WE PUT THEM IN DIFFERENT ZOOM ROOM, THEY WERE INTERACTING WITH EACH OTHER AND TELLING EACH OTHER WHAT THEY WERE FEELING AND WHAT WAS GOING ON WHEN THEY HAD THE CHILD DIAGNOSED WITH AUTISM, THINGS THEY DID NOT SHARE WITH US.

BECAUSE I USED TO SNEAK IN THERE WITH MY HUSBAND SOMETIMES, BUT IT JUST SHOWS HOW IMPORTANT SUPPORT GROUP ARE, BUT NOT THAT THERE ARE MANY OUT THERE.

IT IS MOTHERS OR FATHERS THAT ARE TAKING THE INITIATIVE, THE ONES THAT HAVE A CHILD ON THE SPECTRUM DOING THIS KIND OF SUPPORT GROUP TO MAKE SURE THEY CAN UNDERSTAND.

ONE THING I WANT EVERYBODY TO KNOW, WHEN YOU GET A DIAGNOSIS, YES, I KNOW IT IS ABOUT THE CHILD, BUT EVERYBODY FORGOT ABOUT THE PARENT.

WE DON'’T GET THAT SUPPORT, WHEREAS, LIKE, WHEN WE TALK ABOUT MENTAL HEALTH, THIS IS A CHILD WE HAD ALL THE GREAT DREAMS ABOUT, AND SOMEONE IS COMING TO US AND SAYING, YOUR CHILD WILL NOT BE ABLE TO DO THIS OR THAT ANYMORE.

NO ONE THINGS ABOUT HOW HURTFUL IT IS FOR THAT PARENT.

A LOT OF THE CHILDREN, SOMETIMES THEY ARE YOUNG IN AGE AND DO NOT UNDERSTAND THAT EFFECT, BUT THE PARENTS -- THAT'’S WHY THIS SUPPORT GROUP NEEDS TO BE AROUND THESE PARENTS WHERE THEY CAN SAY OK, THE DOCTOR GAVE THE DIAGNOSIS.

HERE, I CAN SEND YOU TO THIS SUPPORT GROUP, AND YOU ARE GOING TO FIND PARENTS LIKE YOURSELF.

A LOT OF THESE PARENTS DON'’T GET THAT.

THEY GET THE DIAGNOSIS AND THEN FIND YOUR WAY, FIND THESE SERVICES, AND THEY DON'’T KNOW WHERE TO GO, AND THAT'’S WHY A LOT OF TIMES, THEY TEND TO HIDE FROM THE DIAGNOSIS.

SUPPORT GROUP IS VERY IMPORTANT, AND I ENCOURAGE -- LIKE MYSELF, WHEN I HAVE THE PARENTS AND I'’M SAYING, I'’M GIVING YOU GUYS THE RESOURCES, BUT I'’M NOT HERE TO DO EVERYTHING FOR YOU.

I WANT YOU GUYS TO GO OUT THERE AND EMPOWER OTHERS JUST LIKE YOURSELF.

NOT EVERYBODY CAN DO IT, BUT I WANT OTHERS THAT WANT TO STEP UP TO HAVE THE ABILITY TO STEP UP TO HELP OTHERS AS WELL.

>> SPEAKING ON THAT POINT, I THINK AWARENESS AND GIVING KIDS LANGUAGE, EVEN ADULTS LANGUAGE IN SPACES THAT KIDS WITH ASD HAVE THAT ALLOWS THEM TO HAVE EXTRA SUPPORT, RIGHT?

I WANT TO SHOW YOU THIS CLIP.

DANIEL MEADS HIS NEW FRIEND MAX, AND HE IS ACTUALLY HIS TEACHER HARRIET'’S ARTISTIC NEPHEW, SO WE WANT YOU TO TAKE A LOOK AT THIS.

>> HI, MAX.

CAN I PLAY WITH YOU?

I KNOW.

WE CAN BUILD SOMETHING TALL!

A CASTLE.

MAX, DO YOU WANT TO HELP ME BUILD A CASTLE?

DO YOU WANT TO PLAY WITH ME, MAX ?

WHY ISN'’T MAX ANSWERING ME?

>> WELL, DANIEL, SOMETIMES HE NEEDS MORE TIME TO UNDERSTAND THE QUESTION AND DECIDE HOW TO ANSWER.

LET'’S GIVE HIM SOME TIME.

>> I LIKE BUSES.

I LIKE CITY BUSES AND SCHOOL BUSES AND DOUBLE-DECKER BUSES.

>> OH, I LIKE PLAYING BUSES, TOO.

BUT I'’M NOT PLAYING BUSES NOW.

I'’M BUILDING A CASTLE.

MY CASTLE IS RIGHT THERE.

I MADE A POINTY ROOF.

SEE?

>> DOUBLE-DECKER BUS.

I WANT TO SIT ON THE TOP.

>> WHY DOES MAX KEEP TALKING ABOUT BUSES?

I WANT HIM TO PLAY CASTLE WITH ME.

>> SOMETIMES WHEN MAX IS REALLY EXCITED ABOUT SOMETHING, HE ONLY WANTS TO TALK ABOUT THAT ONE THING.

>> WE KNOW THAT CLIPS LIKE THAT ALLOW KIDS, EVEN AT THAT YOUNG AGE -- KIDS WATCHING ARE TWO OR THREE AND SO ON -- IT GIVES THEM LANGUAGE.

I KNOW THAT YOU WORK WITH THESE LITTLE ONES AS PART OF YOUR WORK .

TALK TO ME ABOUT HAVING RESOURCES LIKE THAT IN THE WORLD .

IT HELPS IN YOUR WORK.

>> ABSOLUTELY.

WE HAVE AN ACTIVE STUDY RIGHT NOW CALLED PREDICTING AND OPTIMIZING LANGUAGE OUTCOMES, AND WE ARE RECRUITING KIDS WHO ARE BETWEEN 2.5 YEARS OLD AND SIX YEARS ON 11 MONTHS.

MY CURRENT WORK IS LOOKING AT RAIN ACTIVATION.

WHEN YOU SHOW KIDS STORYBOOKS THAT HAVE REFERENCES TO A SPECIFIC INTEREST.

THE EXAMPLE HERE IS DOUBLE-DECKER BUSES.

WHAT IS HAPPENING IN THEIR LANGUAGE NETWORK WHEN YOU ACTUALLY ENGAGE THEM.

THAT IS ONE OF MY FIELDS OF INTEREST.

A LOT OF PEOPLE CONSIDER THAT A SYMPTOM OF AUTISM, BUT I ACTUALLY THINK IT IS ONE WAY THAT REALLY BENEFITS PEOPLE WITH AUTISM.

A LOT OF PEOPLE WITH AUTISM HAVE SPECIFIC INTEREST IN ART AND IN MATHEMATICS, AND THEY GO REALLY FAR WITH THOSE INTERESTS.

THOSE OF THE SAME KIND OF SKILLS YOU NEED TO DO A PHD.

YOU NEED TO BE VERY, VERY FOCUSED.

I THINK THERE ARE JUST SO MANY ASSOCIATIONS BETWEEN THE WAY PEOPLE VIEW AUTISM AND THE WAY THAT PEOPLE VIEW OTHER MARGINALIZED IDENTITIES LIKE BEING BLACK OR BEING QUEER, AND THEY HAVE THE SAME INTERACTIONS WITH SYSTEMS OF POWER, SO WE KNOW THAT PEOPLE WITH AUTISM ARE DIFFERENTIALLY POLICED.

TOO MANY OF THEM END UP IN JAIL OR KILLED BY POLICE BECAUSE THEY DON'’T KNOW WHAT IS GOING ON, SO I THINK THERE ARE REALLY A LOT OF POINTS OF CONTACT BETWEEN BLACK AND BROWN IDENTITIES AND PEOPLE WITH AUTISM, TO OFFER THEM UNDERSTANDING, THE DISABILITY THAT THEY HAVE, THEY ARE DISABLED BY THE WORLD BECAUSE WE DON'’T SET UP THE RIGHT ACCOMMODATIONS AND SERVICES FOR THEM.

THEY HAVE DIFFERENCES THAT MATTER AND THAT COUNT AND WHEN YOU LEVERAGE THOSE DISTANCES AND SEE THEM AS A PART OF YOUR COMMUNITIES, THEY CAN GO REALLY FAR.

>> ABSOLUTELY.

DR. SPENCER, AS WE WERE DOING RESEARCH FOR THIS SHOW, I SAW THAT THERE WAS A STUDY OUT OF MCGILL UNIVERSITY THAT SHOWS THAT THERE ARE PHYSICIANS WHO ARE HESITANT TO ACTUALLY DIAGNOSE ASD IN BLACK FAMILIES, AND WE KNOW THAT GETTING A DIAGNOSIS CAN BE A CHALLENGE.

WHAT DO YOU THINK NEEDS CHANGE IN THE HEALTH CARE SPACE IN ORDER FOR PHYSICIANS TO GIVE FAMILIES THE DIAGNOSES SO THAN THEY CAN GET THAT TREATMENT THEY NEED?

>> I THINK THAT IS THE GREAT QUESTION.

I WOULD DEFINITELY BE INTERESTED IN KNOWING MORE ABOUT THE STUDY.

THINK WE KNOW THERE ARE SUCH SIGNIFICANT HEALTH CARE DISPARITIES FOR BLACK PEOPLE AND BLACK FAMILIES IN GENERAL.

I THINK THERE NEEDS TO BE A LOT OF RECOGNITION FROM PROVIDERS ABOUT WHAT THEY CAN DO PERSONALLY TO MAKE SURE THEY ARE GIVEN THE SAME -- GIVING THE SAME CARE TO EVERYBODY REGARDLESS OF RACE -- NOT EVEN REGARDLESS OF RACE, CONSIDERING STRONGLY THAT A RACE, MAKING SURE THE TREATMENT THEY ARE GIVING AND THE CARE THEY ARE GIVING DOES NOT DIFFER BETWEEN FAMILIES.

I THINK ANECDOTALLY, YOU HAVE PEOPLE WHO KIND OF GET NERVOUS WITH PEOPLE WHO HAVE WHAT THEY CONSIDER STRONGER REACTIONS TO THINGS, WHICH MIGHT MAKE THEM MORE HESITANT, BUT THAT MAKES THEM -- THEIR REACTIONS REALLY AFFECT WHAT KIND OF CARE YOU GET AND HOW YOU DELIVER THE NEWS.

IT JUST MEANS YOU CAN ACKNOWLEDGE THAT.

I SEE YOU ARE HAVING A STRONG REACTION RIGHT NOW.

YOU KNOW, HOW CAN I HELP?

OR JUST ACKNOWLEDGE THE ELEPHANT IN THE ROOM IF YOU ARE FEELING THAT.

I THINK COMFORT IS SOMETHING THAT A LOT OF PHYSICIANS NEED TO LEARN IN ORDER TO GIVE PEOPLE THE CARE THEY DESERVE.

>> IF -- WHEN YOU ARE SEEKING DIAGNOSIS OR WHEN YOU'’RE SONS WERE DIAGNOSED, I DON'’T KNOW IF THIS WAS SOMETHING THAT WAS BROUGHT TO YOU.

WAS IT A DIFFICULT PROCESS?

WAS IT SOMETHING YOU SORT OF NOTICED THAT YOUR KIDS NEEDED?

>> MY TWO CHILDREN, THEY HAVE ASD.

MY SECOND CHILD WHO WAS DIAGNOSED BEFORE MY FIRST CHILD -- MY OLDEST GOT DIAGNOSED AT FIVE YEARS OLD, AND THE REASON IS BECAUSE I DID SEE THE SIGNS.

HE WAS WALKING ON HIS TIPTOES, FOR EXAMPLE, BUT WHEN I BROUGHT IT TO THE PROVIDER, IT WAS LIKE, OH, HE'’S A BOY.

HE WILL GET OVER IT PRETTY SOON.

DON'’T WORRY ABOUT THAT.

THAT IS WHY EARLY INTERVENTION IS IMPORTANT, BUT THEY DID REFER ME TOWARD INTERVENTION NOT KNOWING WHAT IT WAS, BUT I DID AND MY SON, MY OLDEST, AND ENDED UP ENROLLING MY SECOND CHILD.

AS HE WAS ENROLLED IN EARLY INTERVENTION, THAT'’S WHEN THE PERSON WORKING WITH HIM HAD REALIZED THERE WERE SOME SIGNS OF ASD, SO SHE SAID, HEY, I SEE SOME SIGNS OF AUTISM, AND I SAID, WHAT IS AUTISM?

BECAUSE I HAD NO IDEA WHAT IT WAS.

TO MAKE A LONG STORY SHORT, YOU KNOW, SHE SAID, BRING IT TO THE PEDIATRICIAN, AND SHE GAVE ME A REFERRAL AND ASKED ME TO CALL TO GET A DIAGNOSIS.

IT WAS SUPPOSED TO BE FOR CHILDREN AND THEY TOLD ME THE WAITING TIME WAS FIVE YEARS.

AT THAT TIME, MY SON WAS 18 MONTHS, SO I COULD NOT WAIT.

HE SAID HEY, CALL DIFFERENT PLACES.

THAT SAME YOUNG LADY -- I WILL NEVER FORGET HER BECAUSE SHE'’S THE ONE THAT HAS A LOT TO DO WITH WHERE WE ARE TODAY -- SHE HAD SAID, HEY, LISTEN, I'’M GOING TO CHECK WITH A FRIEND OF MINE THAT WORKS FOR THIS AGENCY, AND THEN THAT'’S HOW WE ENDED UP GETTING THE DIAGNOSIS, AND I WAS REFERRED TO ANOTHER CENTER FOR MY SON, AND I DOCTOR OVER THERE BECAUSE WITH MY OLDEST AT THAT TIME REALIZED WE WERE SEEING SOME SIGNS HERE.

AT FIVE YEARS OLD, MY SON WAS DIAGNOSED WITH ASD AND MY YOUNGEST AT 18 MONTHS.

IMAGINE, TOO, WAITING FOR FIVE YEARS, PLUS MY OTHER SON THAT WAS ALREADY FIVE AT THAT TIME, THAT IS 10 YEARS, SO HE WOULD HAVE BEEN DIAGNOSED AT 10 YEARS OLD.

THAT IS WHY IT IS VERY IMPORTANT THAT PROVIDERS ARE OUT THERE LETTING PEOPLE KNOW, THESE ARE THE SIGNS, AND IF AND MOM SAYS SOMETHING, WE ARE SEEING THE THINGS.

WE KNOW WHAT IS NORMAL AND NOT NORMAL.

NOW IS IT'’S DIFFERENT BECAUSE YOU SEE PROVIDERS ARE MORE AWARE OF DIFFERENT THINGS.

THE OTHER DAY I WAS WITH MY SON, AND THEY WERE READY FOR HIM BECAUSE THEY KNEW HE HAS AUTISM.

CERTAIN THINGS HE LIKES AND CERTAIN THINGS HE DOES NOT LIKE, BUT BEFORE I WAS NOT LIKE THAT.

BEFORE IT WAS LIKE, WHY ARE YOU NOT READY FOR MY SON?

WHY ARE YOU GIVING HIM A SHOT?

YOU KNOW HE IS GOING TO BE SCARED.

>> I WANT YOU TO JUMP IN BECAUSE I KNOW WE HEAR AUTISM AND FOLKS'’ LIMITED KNOWLEDGE, THEY THINK OF JUST BOYS AND OFTEN TIMES, GIRLS GO UNDIAGNOSED AND UNTREATED.

>> YEAH, WELL, I THINK THAT A LOT OF STUDIES FOCUS ON HOW AUTISM PRESENTS IN SPECIFICALLY WHITE MALES AND THEN GO OFF OF THAT HOW IT PRESENTS IN BOYS AND IN GIRLS, SO I THINK THERE HAS BEEN MORE RESEARCH AROUND HOW IT PRESENTS IN BLACK AND BROWN MALES, BUT NOT AS MUCH RESEARCH WITH GIRLS, SO THERE'’S A LOT OF OUTSIDE CONTRIBUTE IN FACT ARE TO WHY IT IS NOT BEING DIAGNOSED, BUT I DON'’T THINK THE RESEARCH IS THERE JUST YET.

>> YOU ARE DOING THIS RESEARCH.

WHAT ARE YOU SEEING IN TERMS OF GENDER DIFFERENCE?

>> WE ARE REALLY TRYING TO ACTIVELY RECRUIT MORE FEMALE PARTICIPANTS, AND WHAT JOY SAID IS EXACTLY RIGHT.

THE ARCHETYPE FOR SETTING AUTISM IS THE WHITE MALE, AND GIRLS PRESENT VERY DIFFERENTLY OFTEN.

IT COULD BE BECAUSE OF SOCIALIZATION.

IT COULD BE BECAUSE OF MASKING, THESE KIND OF DYNAMICS, BUT ALL WE KNOW IS THAT WE NEED TO STUDY THEM FURTHER.

IT IS EXTREMELY UN-ACCEPTABLE THAT SO MANY WOMEN ARE NOT DIAGNOSED UNTIL THEIR 30'’S.

YOU CAN IMAGINE HOW MANY MISUNDERSTANDINGS, HOW MANY PIECES OF DISCRIMINATION THEY HAVE EXPERIENCED UP UNTIL THAT POINT.

THERE'’S USUALLY ACCUMULATED GRIEF WITHIN THOSE FAMILIES BECAUSE THEY WERE NOT AWARE ABOUT THE DEVELOPMENT OF DIFFERENCES AND WERE ATTRIBUTING THEIR DIFFERENCES TO PERSONAL CHOICES, THESE KIND OF THINGS, WHICH IS REALLY SAD.

THEY NEEDED SERVICES MUCH EARLIER, SO IT IS ABYSMAL, REALLY.

IT IS ACTUALLY AN AREA THAT SPECIFIC ATTENTION AND URGENT ATTENTION.

>> SPEAKING ABOUT THAT, WHAT IS THE CALL TO ACTION HERE AS WE HAVE THIS CONVERSATION, WHICH I THINK IS LONG OVERDUE?

>> I THINK THE CALL OF ACTION IS CLEAR ABOUT HOW WE NEED TO EXPAND HOW WE LOOK AT WHAT IS CAUSING THE GAP BETWEEN WHEN, YOU KNOW NON-BIPOC CHILDREN COMPARED TO BIPOC CHILDREN ARE BEING DIAGNOSED.

I THINK SO MUCH OF THE DISPARITY IN RESEARCH OVER THE YEARS HAS FOCUSED ON PROVIDING RESOURCES OR WHAT KIND OF EDUCATION THAT CAN BE PROVIDED, THINGS LIKE THAT, WHERE THE ISSUE IS MUCH BROADER THAN THAT.

IT IS WHAT KIND OF THINGS WE CAN DO TO MAKE SURE THAT CHILDREN AND FAMILIES ARE GETTING THE CARE THEY NEED.

WHAT KIND OF SYSTEMS CAN BE DEVELOPED, WHAT KIND OF SYSTEMS DO WE NEED TO HAVE, WHAT KIND OF SPECIFIC OUTREACH WE NEED TO DO?

I THINK IT IS A MUCH MORE COMPLEX QUESTION THEN IT HAS BEEN TREATED HISTORICALLY, AND IT POINTS TO OUR NEED TO KIND OF BROUGHT OUR EFFORTS IN TERMS OF WHAT WE CAN DO TO HELP NARROW THE GAP.

>> YOU ARE IN THE COMMUNITY.

WHAT WOULD BE YOUR CALL TO ACTION FOR FOLKS?

>> I THINK ONE OF THE GREAT POSITIVES IS THAT WE HAVE SO MUCH COLLABORATION WITHIN THE HEALTH CENTER.

AS AN EARLY INTERVENTION SPECIALIST, I'’M ABLE TO GO TO EARLY CHILDHOOD PROGRAMS AND SPEAK WITH TEACHERS, AND SUPPORT THE TEACHERS AND LET THEM KNOW WHAT WE ARE SEEING AND WHAT SIGNS THEY SHOULD LOOK OUT FOR.

WE ALSO HAVE ACCESS TO ALL THE PEDIATRICIANS AS WELL.

WE ARE ABLE TO CREATE COLLABORATION AND PARTNERSHIP WITH ALL THE SYSTEMS THAT WILL NOT ONLY BE PREPARED FOR KIDS COMING IN BUT THEN ALSO BEING ABLE TO SUPPORT AND PROVIDE THOSE RESOURCES AND EMPOWER FAMILIES AS WELL.

>> YOU ARE NODDING.

>> YEAH.

THINK SOMETHING TO ALSO PAY ATTENTION TO IS INTERSECTION.

WE SEE A LOT WITH ADHD DIAGNOSES , WHITE CHILDREN RECEIVING MANY MORE OF THEM AND BLACK CHILDREN INSTEAD ARE GETTING CONDUCT DISORDER, OPPOSITIONAL DEFIANCE.

WE SEE SOME OF THE PATTERNS REPLICATING THEMSELVES WITH CHILDREN WITH ASD THAT WHEN TEACHERS AND CLINICIANS SOMETIMES SEE BLACK CHILDREN STRUGGLING TO COMMUNICATE SOMETHING THAT THEY NEED HOUR SOMETHING AND THEN SEE SOME BEHAVIORAL ISSUES, THEY DON'’T THINK OF THERE MIGHT BE NEUROLOGICAL DIFFERENCES.

THEY ARE LIKE, THERE IS A BEHAVIORAL ISSUE.

YOUR SON IS BECOMING AGGRESSIVE.

LIKE, A LOT OF THE STEREOTYPING WE SEE BETWEEN THE POLICE IN OUR COMMUNITIES IS ALSO HAPPENING IN THE CLASSROOMS, ALSO HAPPENING IN EARLIER MEDICAL CENTERS, AND THEY REALLY WERE JUST TRYING TO APPROACH CHILDREN, THAT THAT IS THE MESSAGE, APPROACHED CHILDREN IF THERE IS SOMETHING GOING ON WITH THEM BEHAVIORALLY, MAYBE THERE IS -- MAYBE THEY ARE TRYING TO EXPRESS SOME THING THEY CANNOT YET EXPRESS.

>> IN OVER LAST MINUTE OR SO, AS A MOM AND ASKED SOMEONE WHO WORKS WITH OTHER PARENTS, WHAT WOULD BE YOUR CALL TO ACTION?

>> MY CALL TO ACTION IS GET THE CHILDREN DIAGNOSED.

THAT'’S THE FIRST STEP.

I KNOW IT IS DIFFICULT, AND, DEPENDING ON THE BACKGROUND, WE JUST HAVE TO GET THAT OUT OF THE WAY AND GET THE DIAGNOSIS.

IT IS JUST US WORKING TOGETHER AS A COMMUNITY.

WE NEED MORE AWARENESS.

WE NEED PEOPLE TO TALK MORE ABOUT AUTISM BECAUSE THE MORE WE TALK ABOUT IT, THE MORE THE COMMUNITY WILL BE AWARE OF IT, AND THE BETTER OUR CHILDREN WILL BE BECAUSE THEY WILL GET THE RESOURCES AND HELP THEY NEED.

>> THAT'’S RIGHT.

I WANT TO THANK YOU ALL FOR YOUR TIME TODAY.

JUST AN AMAZING, ROBUST CONVERSATION.

THAT IS THE END OF OUR BROADCAST AND OUR SHOW.

THANK YOU SO MUCH FOR JOINING US.

HAVE A GOOD NIGHT.

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