Barry Prizant: Shaping Compassionate Autism Understanding Through Passion, Research, and Personal Narratives

Welcome to Why Not Me the World?
Podcast hosted by Tony Mantor broadcasting from Music City, USA, Nashville, Tennessee.
Join us as our guests tell us their stories.
Some will make you laugh, some will make you cry.
Real life people who will inspire and show that you
are not alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Manturer. Welcome to Why Not Me the World?
Today's guest is very presigned. He is a leading expert
on autism, accomplished author, and his accomplishments are just too
numerous to mention. You can easily find out more about
him by searching his name online. I am very thrilled
that he could join us today, So thanks for coming on. Sure,
my pleasure. So can you share with us what drew
you to get into autism research?
Well, if I could start with how I got involved
with autism. Sure, I actually started out as a teenager
working in residential summer camps for people with disabilities, Okay,
and I always like to say that was about the
same year I went to Woodstock.
Okay.
I started out working on the ground with people being
responsible for their welfare, of their happiness. You know, we
lived with the kids. I did that for six years actually.
Wow.
Then academically I started to steer my interests towards speech
and language pathology. Okay, so I am a speech language
pathologist by training, but I was always interested in language
and language development. So I had these two kind of
power lel tracts of academically becoming more interested language development.
I don't even know if it's a field anymore, but
I was a psycho linguistics major, which has to do
with the relationship between thought and communication and language. And
then I was working at summer camps with people who
had problems communicating, and then went on from my master's
and doctorate in communication disorders.
That's quite a good background. And how you developed that, Yeah.
And I always say to have the experience of, you know,
not the twenty four to seven experience that parents have,
but to have the experience of literally being responsible for
the welfare and happiness of people with different kinds of disabilities.
And there was a mix of autistic people, both children
and adults. It really grounded me sure, and it allowed
me from very early on to question a lot of
what I was reading in the academic literature, which I
felt was very inaccurate at that time from my personal experience.
Okay, so this was what about forty fifty years ago
something like that, more than fifty years ago, okay, nineteen sixty,
nineteen sixty eight, nineteen sixty nine. Okay, So that was
in a time when autism really wasn't well known and
people didn't really know what it was all about.
So that would say that you was.
Kind of on the very beginnings of the knowledge that
was to come out late in later years in developing
what autism is well.
To some extent, I think there was a lot of
misunderstanding about autism, right. I worked in let's see nineteen
seventy one nineteen seventy two in a Buffalo children's hospital.
I worked in a classroom program for kids who were
all diagnosed as autistic. You know, this was just kind
of the end of the era of what was called
the refrigerator mother era that bad parenting caused autism. We
never felt that way, Okay, the people I worked with
never felt that way. So it was about three eras ago.
Yeah, that's a long time for sure. I had temple
granted on yeah. One of the things that she focused
on was how we have gotten better at not blaming
the parents for the autistic children.
Yes. Absolutely, yeah, And I because I've been around a while,
I organized conferences for many years because we do a
parent retreat weekend. It's actually next weekend. It's our twenty
sixth annual Parent Retreat weekend, and it's a really great experience.
So we had fundraising conferences and I've hosted Temple three
or four times. As a matter of fact, she called
me the other day just to chat about something. So
I think she is just such an incredible person, and
she really is the person who helped us think about
how autistic people think and see the world.
Yes, she is definitely great because she isn't. The realm
of what you see is what you get. Yes, that's
kind of refreshing in this world because a lot of
people are trying to put this mask on and show
people what they are rather than just showing people what
they are.
It is so true. That's why I do. I continue
to do what I started doing fifty years ago. I
just I now collaborate with quite a few autistic people.
I've published with them, I present and it's just so
refreshing to have, you know, no hidden agendas, not these
layers of being politically correct, right, the honesty and the
sincerity and the loyalty. Yeah, I have the autistic friends
who really helped me out. They're just very, very loyal people.
Yes.
And even when you talk about autistic kids or people
who are more challenged in their ability to communicate, I've
done a number of interviews with non speaking people who
you spelling boards or it's still the same honesty, in
the same directness.
Yeah.
So when you moved from the summer camps then to
the college world, what was after that and what developed
to lead you to where you are today.
Well, let me just say, without naming names of people
that you know your listeners won't know, I had great mentors,
wonderful mentors along the way. So I was Initially I
was in university programs for speech and language pathology. But
then I was recruited at at a relatively young age
early in my career. I was about thirty four. I
was recruited to the Brown University program in medicine to
develop a department in a children's psychiatric hospital. Wow, And
that was significant because it actually was the very first
what if you want to call it speech language pathology
or now people refer to communication disorders. It was the
very first department focusing on communication and issues and kids
with issues that were defined as emotional behavioral disorders, okay,
and autism was kind of associated with that. So I
was in a children's psychiatric hospital for almost ten years
and then went on to a few other universities after that.
But I've been in private practice for almost thirty years now. Wow,
that's great with what's called adjunct appointments in different universities.
So still go out there and get into preschools. And
last week I was hanging out with classrooms of four
and five year olds and I love them. I just
love it. Yeah.
Yeah, that's great because when you're working with kids, you
get what we was talking about before, and that's the
honesty factor. There's no filters. They just say what's on
their mind and it's kind of refreshing actually, and sometimes
you can get the most intriguing conversations by that honesty.
Yeah. Absolutely. And you know, the other piece that I've
been so privileged to have is that I live in
an area I've lived in. I'm a New York city kid.
I grew up in Brooklyn and then went way to school.
But I've been living in Rhode Island with my wife,
raised my son who's now an adult, for forty years,
and it's a relatively non transient area. There are families
who stay and they pretty much stay grounded here. So
I know families whose kids I first met when there
were three, four or five years of age were now
in their thirties. So I have had the chance to
follow the journey of families and all the stages and
steps and challenges and victories and cell librations that they've
gone through as well.
Well.
I can definitely relate to that because I'm originally from Maine.
Ah there you go.
Yeah.
I go back home a couple times a year, and
I fondly tell people that I'm going back to the
land that time forgot, because basically not a lot has
changed right there you go, Yeah, And like you say,
people stay, don't move around much. You can follow the
journey of a family from infant to young adult. And
you know, that's a very good thing to live with.
Yes, it is a good thing, and I love it
when you know in this area you ask for directions
to go to a particular place, they say, oh, well,
you make a left turn up the road where the
Texico station used to be.
Yeah, I know exactly what you're talking about there for sure.
So you help everyone from kids to adults, is that correct?
Yes? Yeah, I mean literally, I'm involved right around the
time of early diagnosis of some kids. I mean families
whose kids were just diagnosed a month or two before,
especially when I go out to schools and precos. But
I also am very involved, and I don't know if
you know, but I also do a podcast okay with
an autistic audio engineer.
Oh that's great.
Yeah, his name is Dave Finch, and we've been doing
this for three years. It's called Uniquely Human the podcast. Again,
I've had the privilege to interview and get to know, oh,
at least fifty autistic people who specialize in different areas
in their lives.
Yeah, that's nice. That's kind of what I've been doing
over the last year exactly. Yeah. I'm interviewing people that
are either autistic, raising autistic children, finding out that they
are autistic, or finding out their autistic later in life.
It's been such a wide view that I've had and
I'm just hoping that people that listen pick up something
that can help them in their lives and hopefully it's
just a win win situation for everyone involved.
Yes. Yeah, And when I have kind of younger professionals
kind of asked, well, how did you get to where
you are and what you do in and I say,
hang out with families and hang out with autistic people.
Yeah.
I did the academic thing, and I'm not going to
go through my credentials, but I was lucky enough to
be promoted and all that kind of stuff. And I
still say, by far, most of what I've learned is
from families and from autistic people.
Yeah.
I follow the research and I read it, but if
you want to get the authentic lived experience.
As you know, that's what you absolutely So, Yeah, you've
done so much and I know that everyone else there
definitely appreciates it. But so that my audience can know
what you've done, I think they need to know that
you've been invited to speak at the United Nations twice.
That's correct, Yeah, yeah, that must have been pretty awesome. Well,
first of all, because it's the United Nations, it's definitely
has a multicultural focus.
Yeah, so there are there was a mom you know,
from Africa with her son that when he was young,
they thought he was a demon, you know, and there
he is, this wonderful young man with him. It was
first of all, just the recognition and the exposure given
to autism. And the two times I was there, actually
I was there three times, one time just as a visitor.
Very progressive, I mean, very forward looking and really trying
to put aside the whole stigma across cultures of what
autism is. So it was a wonderful experience.
Oh, I can just imagine it was. And you brought
up a good point. There are many countries around the
world that even today think that autism is a product
of the devil, and it's just a misconception, and I
think that just definitely needs to be changed.
Yeah, And there are countries where there isn't even the
word for disability or autism in their language. And that's
a little bit different because in some of those cultures,
especially agricultural societies, autistic people very often fit very well
into that. It's a very physical lifestyle, it's a very
routinized lifestyle, a very healthy lifestyle. And we interviewed a
woman and this is in the US obviously an autistic
woman who's Ojibwe. She lives in Minnesota and she's very
involved at the state level as far as advocacy. She
talks about that in the Ojibwe language, there's no word
for autism and there's no word for disability, and they
just embrace people for who they are.
Wow.
Yeah, that's actually pretty good. Yeah, because that way, there's
just no labels at all.
Yes, absolutely.
Yeah, it's too bad that people in the world just
can't discard these labels and just start accepting people for
who they are.
Yeah, it's so true. And what this person said, her
name is Jules Edwards. What she shared was that, but
then they have to deal with the real world and
get a diagnosis and put a label on a person
so they can get the funding for the support.
Yeah, that's sad, because that's where we have to get
the government involved. You mentioned that you have a podcast
and it's uniquely human. Is that correct?
Right, that's correct? Yes?
Is that based off your book?
It is?
So could you tell us a little bit about that.
Yeah, well, well, the book was published in its second
edition two years It came out in twenty fifteen. It
was published in an expanded edition in twenty twenty two.
I was lucky enough to work with a dad because
so much of my writing had been kind of academic
writing for years. So I worked with Tom fields Meyer,
who does everything from help people write their memoirs and
he has an adult son with autism. So we became
very good friends. And the book has been the best
selling book in autism since twenty fifteen.
Wow. That's great.
It's a story book, the book of stories of kids
and families. And then I bring in kind of some
of the research we'd done over the years. You know,
quite honestly, I never expected it to get the reception
that it's gotten. It really blows me away. I mean
I get notes, emails, letters from parents whose kids were
just diagnosed a week before and somebody recommended the book.
I've gotten notes from autistic people in their sixties saying,
oh my god, I diagnosed myself by reading your book.
Wow.
And so it's just such an honor, you know, to
be able to put something out there, and it's really
the only mainstream work that I did. You have an
educational model, and you have these books that are kind
of written for graduate classes and universities and my son
and my wife would hear all these stories that I
would tell about what I've learned, and they would say,
you need to write a storybook. So I went ahead
and I did it, and quite honestly, I never ever
expected the reception. So it's now translated into twenty six languages.
Wow, that's so nice.
I can fully understand your non comprehension about how it's
doing well because I was in the same situation with
my podcast, and I've been totally amazed at what's done
so far.
Yeah.
I'd started to help a few people doing a couple
of shows a month, didn't expect at the last, you know,
much more than a couple three months, and then all
of a sudden it just exploded on me.
So you just never know what to expect.
Yeah, there's such a need for straightforward honesty, you know.
And also there's such a need for podcasts and information
that's all all not heavy and not doom and gloom.
Absolutely, and that's a great thing. I've had the privilege
of interviewing, well, I don't call it interviews. I call
it conversations like what you and I having right now.
I've had conversations with people that have been diagnosed in
their thirties and of course their forties. Yes, I've also
had doctor Rachel Moseley where we talked about suicide among
young autistic females and when people heard that, they thought
it was going to be very dark and very morbid,
but it wasn't. It was all about information. And of
course I've talked with Temple and just so many people
that have given such great information that will definitely help others.
I talked with one lady that her son developed from
a small kid to a six foot two, three hundred
and ninety pounds, and when he had a meltdown, it
was just devastating. Those things have to be put out
there so that people can understand what needs to be
done to help so many others that are living day
to day.
Yeah, I think for parents and family members and professionals
who are really in the trenches every day. One of
our guests what once said, my autism gives me a
BS barometer that I know if this person is just
kind of well, they read something or they were a
self appointed expert as opposed to they've been there and
they've lived the experience. And I think people really appreciate
it and so it's so important that you're doing that.
Absolutely, I love that bes biometer. I think I'm going
to have to remember that. I think the biggest thing
out of hopefully your podcast and mine and others out there,
is getting the understanding of autism, because so many people
are aware of it and they accept it, but they
truly just don't understand it, and.
Then it gets laid on autistic people and families. As
a matter of fact, I'm now kind of sketching out
possibilities for a follow up book, and I'm thinking of
the title being Misunderstood.
Yeah, yeah, that's great.
I mean the kinds of things, the kinds of attributions
made about autistic people, you know, going way back to
Leo Kanner in nineteen forty three. I mean it's just horrendous. Yeah, yeah,
it's as well. Yeah yeah.
I think that autism was actually first diagnosed in like
nineteen ten, and it was two words, psychosic and psychotic. Yes,
So to get it from those two words to what
it is today, that's a pretty larger leap.
Actually, Oh absolutely. And you know, I think the other
thing that I know I could speak personally, but I
really try to emphasize when I give talks now, is
that if you understand people who have very different what
we call developmental profiles, they're really good at some things
and not so good at other things, then you could
reflect on yourself and be more self aware of what
you're really good at and what you're not so good at.
Yeah, that's that's actually good self diagnosis. Now, I think
you come up with something else that people need to
know about. I think it's called what SERTs. Yes, yeah,
So can you elaborate on that and tell us a
little bit about it?
Yeah, that's it's an educational framework, okay, in which we
identify what we feel are the highest what we call
the highest priority areas to work on.
Okay.
And so SEERTZ stands for the sc is social communication.
And I mean there's nobody who disagrees with the fact
that communication opens up so many doors to a good
quality of life. So that's and the second domain is
the er of CERTs emotional regulation. And we feel that's
something that's really been left out for so many years
because people talk about behavior management. How do you manage
the behavior? So you just spoke about a young man
who's three hundred some odd pounds and when he has
a meltdown, oh my goodness, we would say, why is
this young man disregulated? And how can we help him
to maintain a well regulated emotional and physiological state. And
that's not even in the DSM diagnostic criteria, yet it
still is one of the most challenging things, even for
the most intellectually gifted autistic people. You know, anxiety issues
such as that are really big. So that's social communication,
emotional regulation. The third domain, and the final domain is
the TS and that's transactional support. And it's a fancy word.
I'm not going to get into the specifics of what
transactional is, but it's all of the ways that we
support an individual a family member. How do we support
them educationally, how do we support them in developing trusting relationships?
So it's we talk about learning supports and interpersonal supports.
That's a huge issue. A very dear friend of mine,
Michael John Carley, who's autistic, we wrote a two part
article on developing trust with autistic people. But families so
often don't find professionals trustworthy or school districts trustworthy. So
that's the obligation that falls on the rest of us.
How do we provide support, which we call transactional support,
which means it's a two away street. You know, how
do we provide support so that, you know, a person
on the spectrum in the family could have the best
quality of life.
Yeah, that's great because when you stop and think about it,
when a young child is diagnosed autistic and they get
that label, even though the school system will treat them
a little bit differently in trying to help them, if
they're not fully prepared and don't understand it, then ultimately
it can spiral out of control.
Absolutely. And you know, one of the things that is
kind of tricky to understand is that even sometimes the
best intention people, the people are really well intentioned, are
doing things that are just throwing gasoline on the fire.
Yeah. Absolutely.
It reminds me of a lady I spoke with that
was a special needs teacher, and because of that, she
thought she was just going to be a great autistic mom,
and ultimately, when she started living at day to day,
she had to stop and reevaluate things because it wasn't
exactly as she expected.
Absolutely, you know. And there's another angle to this as well.
You can have a teacher who's wonderful with aatistic children
or a particular child.
They might be.
You could have a whatever, occupational therapist, speech and language
pathologist who's really great with a kid, but they don't
know how to communicate with parents, and they unintentionally make
the parents feel more guilty they're not doing enough right.
That's something that's a big part of my work. I
work a lot with families and help professionals on really
to learn how to listen to families and understand where
they are in their journey.
Yeah, so in some cases it sounds like you could
be a mediator. You're just helping parents and the professionals
find a gateway to working together to help that autistic
child exactly.
I mean, when I do a school consultation, my usual
routine is I will observe a child for some period
of time in their everyday routines in the classroom and
in the school. Then we meet as a team, but
I always insist the parents be invited in. Okay, so
we all sit down and have this intensive three hour
block of I'll get to know a child a little bit,
I'll read some reports, I'll meet with the team. What
are things that are going well? What are the things
that are not going so well, And let's have the
parent's voice involved in all of that.
Yeah, because ultimately they are going to have to live
with it on a daily basis exactly.
Yeah.
And the more they understand and the more they can
learn about their child. Ultimately, what they're doing is creating
an environment that can lift their child to the next
level and hopefully better development as well.
And it goes both ways. Sometimes parents could teach the
professionals sure little things that work and help the professionals
have a greater understanding of the child because the parents
see the kids at their best when their kids are
most challenged in a lot of different settings.
Yeah.
So have you had a situation where you set down
with a parent or a support person or both. You
looked at it and you said, oh, this is a
complete disaster, But yet after listening, talking, going through all
the conversations, it turned out to be a very big success.
Yeah.
Sometimes it happens around communication, especially a few years ago,
when people would always if a child's not speaking or
not speaking yet, that people are pushing speech much too
much and the child is not ready. Maybe the child
has what's called some motor speech issues. Neuromotor issues and
I say, no, this child needs another kind of system
to communicate. Very very often. I mean, there are stories,
and we've interviewed some of these people on our podcast
of autistic people who didn't speak, who were thought of
a severe behavioral disorders and intellectually disabled. When they got
a communication system such as using an iPad with voice
output or something like that, there was a huge turnaround.
So that's one area where I could make contributions around
helping a child's communication system. And sometimes it has to
do with the relationships between professionals and parents, where the professionals,
let's say, parents just want to do the best for
their child and they're extremely stressed out and they're thought
of as being too aggressive that they blame I mean,
the professionals are not doing enough or not listening. I
try to go in there and say, listen, we're all
on the same team, so let's try to clear up
some of these misunderstandings. But I often, I mean the
word you use is absolutely correct. I mean I often
find myself in the role of a mediator and try
to point out but I also find myself going into
a consultation where I'll point out. There's a lot to
celebrate here. You know, this youngster has made some real progress.
You know, the parents say, oh, well, why is any
doing this? And I'll say something like, well, you know,
what was your son or a daughter like six months ago?
And then they'll say, yeah, I guess he has or
she has made a lot of progress. I think it's
important for families to also kind of savor those moments,
and for professionals as well, to savor those moments when
everybody could say, yes, we're heading in the right direction,
we love this youngster, and let's all celebrate the fact
that we've had some breakthroughs here.
Yeah, sometimes you have to step back and look at
the body of work. You just can't look at them
moment in time right now. I know several people that
they look at the moments and all they see is
the last moments of time, which could be a day,
three days, or a couple of months. They don't look
at the six months to a year and see how
their work has really turned something very very positive.
Yes, and I mean your comments is just I really
get it why your podcast is so popular. Your comments
are just so spot on. So let me share a
quote that from a mom from our parent retreat a
few years ago. Her name was Lucy, and I asked her,
what do you value in professionals? And there's someone just
had turned thirty and I first met him when he
was six. And Lucy said, the professionals we have always
valued and had the greatest gratitude for were not the
ones who ever judged us. They were the ones who
joined us on our journey. And what you just said
is right on that point. You can't just take a
snapshot and live in that point in time in that snapshot.
You have to view it as a journey.
Absolutely.
I hear that from all the parents I talk with,
and they say that it's not just a short race,
it's a marathon. So you're standing in an auditorium in
front of about one thousand, two thousand people. You've got
people that know nothing about autism. You've got just diagnosed
autistic people, kids that have just been diagnosed, just the
whole spectrum. What are you telling them so they can
understand what their journey is going to be?
Well, I mean it sounds like a shameless plug here,
but I get a lot of invitations now, kind of
similar to that for keynote addresses, and I start out with,
let's understand that an autistic child or an autistic person
is uniquely human. It is not a list of deficits,
is not a list of challenges. Their reactions are human
reactions like your reactions are My reactions are so just coincidentally,
about three weeks ago, I gave a talk at a
conference in North Carolina organized by parents, a wonderful foundation
where all the money to make goes directly to parents.
It's called Autism Strong Foundation, and the audience was about
two hundred and fifty parents and maybe about twenty professionals.
The right to do is have that theme if that's
the topic people want me to talk on, and have
it resonate at an appropriate level so people can kind
of relate the message to what they're doing in their lives,
whether they're professionals or parents.
The biggest thing that I've come across is everybody has
their unique story to tell. Yes the old saying you've
met one autistic person, you met one autistic person. Yes,
the stories that they have to tell on how they adapt,
how they learn from each other, and in just this
short period of time, if you go back and you
listen to My first one all the way to the
latest one at this out is you get a feeling
for these people and how they do learn how to adapt,
and then eventually they found that they build off that
foundation and then things can grow. And it's going to
be a challenge every day with some of them, but
at least they're growing and they're headed in the right direction.
That's right, absolutely, and I think for professionals who are
listening to your podcast, we have to play that role.
I have to kind of help them understand how they're
growing and the changes that they've gone through. Sometimes when
people will say to me, oh, you know, I have
this child in my classroom and he screams all day,
and I'll drop to the floor before going into the cafeteria,
and sometimes the first question I'll ask will be, Okay, now,
let's talk about when he's doing well. Let's talk about
what's supporting her when she is motivated and engaged and
in a well regulated state, because that gives us the
clues as to what's working.
Absolutely, our conversation has covered a range of important topics.
I believe has been both engaging and informative. I believe
there's so much more that we could discuss and analyze.
What is one last topic that you might like to
focus on and put out there.
Oh, that we're all always still learning, and that we
need to listen to the stories of families, and we
need to listen to the stories of autistic people. Yeah,
I like to share that it's been the because I
go back before Temple, right, you know, before Temple stood
up I think was nineteen eighty six at an Autism
Society conference and said, you want to know about autism,
asked me, and I'm autistic, and the whole room turned
towards her. The field has changed in the most positive
directions because of the voices of autistic people and because
of the voices of family members. So I was promoted
in an Ivy League medical school at the highest levels.
And I still say most of what I learned has
come from even the last few years discussions with autistic
people on our podcast, hanging out with autistic people, because
they have changed what's happening. So the one thing I
would say is listen to autistic people, you know, listen
to family members, get to know them outside of a classroom,
outside of a clinic, because you'll become a better person
if you do.
Yeah.
I think one thing that truly resonates with me goes
right back to my very first episode. It was it
was a lady out of London and she got diagnosed
tender thirties. What really blew it up for that podcast
episode was the fact that she really showed how focused
people can be, yes, and how literal they can be,
because her mother came in one morning, opened up the drapes,
it was a sunny day, and she goes, this is
a great day for the human race, and from that
point on she thought she had to race everywhere she went.
Yeah, he was trying to beat her time, you know.
And that just lit up and everybody just loved that
episode because of the way that she put that focus
into place.
Yes, it's just the stories that they.
Can tell, and they can tell it in such a
way that we can smile and laugh with them, not
at them. I think that's a real important way that
we need to factor in what they do.
Yes, Yeah, And I think you know, one other important
point that I would emphasize is the giving back, even
if it's not intentional, like an autistic person helping you
out with something, it's giving back. So there's a young
man that I talk about in my book and I
show videos of him when I present. His name is
Justin Canna. I know Justin since he was three. Now
in his late twenties. He lives in his own apartment
in New Jersey. He teaches art because he's an artist.
His parents were told he's going to need one to
one lifelong help. And I have an interview with an
employer of his and the employer it was like a
multimedia studio that he worked in for a year, and
the employer said, Justin's a great artist, but so what,
there are lots of great artists. Justin for the time
he worked with us, he was kind of an intern.
I'm in a media studio. Justin was with us. He
was a beacon in a beacon of light who inspired everybody.
And I think there's that giving back once you get
to know, like our dear friend Stephen Shore says, once
you get to know one autistic person, you get to
know that one autistic person. But it's also what you
get back from that that's very important.
Yeah, yeah, I agree, great conversation. I really appreciate you
coming on.
Yeah, absolutely, my pleasure.
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