June 11, 2025 • 41 mins
Jacki Edry
In this conversation ABA and Behaviourism are looked at.
Jackie describes her own experience as an educator and a mother.
Autistic Radio encourages professionals to explore common ground with each other and the Autistic advocacy movements.
"Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery and Faith" and soon after and launched a blog on my site www.jackisbooks.com, which focuses on educational reform, inclusion, neurodiversity, and more. I enjoy linking up with Neurodiversity advocates worldwide
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:03):
We speak our words, we listen,we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
Jules-AutisticRadio.com (00:18):
The perspective that you have that
is different from most people.
One is that you have an autisticchild and you have had to navigate
that autistic child through someof the different ways that autism
professionals have tried to influence.
(00:41):
So there's that.
There's that mom who is mm-hmm.
Trying to work through.
The best for their child.
Jackie-Edry (00:51):
Mm-hmm.
Jules-AutisticRadio.com (00:51):
And it comes from what it looks like in opposition to some
of the autism professionals out there?
Jackie-Edry (00:59):
Oh yeah, most of them.
Okay.
Jules-AutisticRadio.com (01:01):
Yeah.
Jackie-Edry (01:02):
Especially if they do things like ABA.
Oh yeah.
I'm very vocal about that.
Totally anti, yeah.
Jules-AutisticRadio.com (01:09):
I have a project here that is controversial because we are.
We are dealing with the ABAcommunity here, here, over in the uk.
Jackie-Edry (01:22):
Okay.
Jules-AutisticRadio.com (01:22):
We, we are speaking directly to them and
mm-hmm we are allowing them tocome and make recordings with us.
Jackie-Edry (01:31):
Okay.
Jules-AutisticRadio.com (01:32):
And in some ways you could say that we are platforming the.
Behavioral science community, andI, you hear the way that I describe
that behavioral science community.
Mm-hmm.
So, so that is a very vulnerableposition that I have put this
project in by doing that.
Jackie-Edry (01:54):
Okay.
Jules-AutisticRadio.com (01:55):
And the reasoning that I have behind that is
because there are already enough peoplewho are creating the, the protest.
There are already enough people whoare ensuring that the, the perspective
(02:16):
that behavior modification andthe creation of masking strategies
within children is inappropriate and
Jackie-Edry (02:28):
mm-hmm.
Jules-AutisticRadio.com (02:28):
O other words that I'm not going to say at the moment.
Okay.
There are other people doing that.
Jackie-Edry (02:33):
Mm-hmm.
Jules-AutisticRadio.com (02:35):
And
Jackie-Edry (02:36):
Right.
Jules-AutisticRadio.com (02:36):
I have taken the rather controversial step of
speaking to them directly and mm-hmm.
Gaining some kind of trust and confidencein them that they will be able to speak
freely and it's only when they speakfreely, in my opinion, that they will
have any chance to access the autisticexperience from our point of view.
Jackie-Edry (03:02):
Mm-hmm.
Jules-AutisticRadio.com (03:03):
Does that make in, does that make sense to you
Jackie-Edry (03:05):
Yeah, I think that that open dialogue is really, very important.
And there's a, a very fascinatingman, his name is Scott Fraser.
, ,Jules-AutisticRadio.com: We recently recorded with him, and he's going
to be making a series of podcastswith us and, and work with us.
Brilliant.
So, that's what he does.
He, he, he, he asks questions and allowseverybody to speak, and he is fantastic.
(03:29):
I learn a lot from him and, and so, yeah.
Good.
I think that's very important.
And then I, I also will speak to anybody,when I was in college, , I did a research
project and it turned out it was in abehavior modification school, which was,
now, you know, the name is ABA, but at thetime it was called behavior modification.
And I had firsthand experienceof what, what it's like to
(03:51):
be on the other end, right.
It didn't sit with me particularly becauseI had worked with a young boy from the
time when I was in high school and for anumber of years, and we did child centered
approaches , and he was doing great.
I lost track of him for a numberof years , and then I found him.
Our conversations here on autisticradio are personal and informal.
(04:13):
Please don't imply if somebodymentions an organization, they're
not representing that organization.
It's all personal comments.
They speak with theirown words for themselves.
Jules-AutisticRadio.com: Welcome back to Autistic Radio. (04:27):
undefined
I want to emphasize to you the listener.
That it's a privilege for us tohave your time, your commitment
to listening to us matters to us.
I have somebody with me today to introducein our short introduction series.
(04:50):
Jackie EDRi is the mum of an autisticperson, and she's also written a
book that I've started to read.
It was only in the first few minutesof reading the book that I have to say
that there was some emotion for me andsome tears pricked in my eyes because
(05:15):
of the, the feeling of empathy for oneof the children that she described.
I would like to just ask Jackieto tell you a little bit about
what she's done, what she's doing,and what she sees the future.
Hi, Jackie, please tell usa little bit about yourself.
Jackie-Edry (05:36):
Hi, thanks so much for having you.
I'm, I'm greatly honored to be here.
, As you said, I'm, I'm the privilegedparent of a autistic son and other
neurodivergent kids with a varyingdiagnosis, whether it be a DHD,
dyslexia, Alan Syndrome, and allvarying forms of Neurodivergence
from the time I was in in high school,and that was a really long time ago, I,
(05:58):
I worked with kids on the spectrum andmy thesis in college also to do with
programs for educating autistic kids.
My son was born many years later.
As he was growing up and, and thechallenges that we faced, , not
raising him, rather dealing with , thesystems that we'd had to deal with, uh,
education and advocating for his rights.
I started to become a parentadvocate, working with parents,
(06:21):
training professionals.
And then 11 years ago I had a massive, uh,tumor discovered on my brainstem and I.
Had, uh, surgery, very dangerous surgery,when I woke up, all of my senses were
scrambled and I definitely , became muchmore neuro distinct than I already was
(06:42):
beforehand, especially with living with asensory environment that was disorganized
and frightening, and I had to learn howto do walk, talk, function all over again.
What I discovered from being on bothsides of the coin, whether it was
parent, caretaker or professional,to now having a brain that was trying
(07:06):
to cope with sensory dysregulation,disorganization in terms of my body and
my brain, sometimes engaged my mouth,words would get stuck, stutter, et cetera.
That I was now on both sides ofcoin, and I gained a lot of insights,
what it was like, because the thingsthat I had been observing all along
(07:27):
and thinking that I understoodnow, I was experiencing firsthand.
And so what I decided to do was helpothers with those insights, and that's
why I decided to write a book andstart that journey of linking up with.
People from around the world and, andspeaking and writing and blogging and,
and doing everything I can to helpfacilitate understanding and improve
(07:53):
the quality of lives for autisticor neuro divergent individuals and
their families and caretakers alike.
Jules-AutisticRadio.com: That's quite a lot. (08:00):
undefined
That's quite a lot.
Such an interesting situation.
We're kind of reminding peoplehere that neurodiversity covers
the whole of humanity, but thatthe neurodivergent tag that we use
covers people who have a significantdifference from what we call might call.
(08:25):
The, the majority populationor the average, I'm not
gonna use the word normal and
Jackie-Edry (08:32):
mm-hmm.
Jules-AutisticRadio.com (08:33):
You, yeah.
And I don't even know what, howaverage, average is, but yeah.
It's almost impo.
Yeah.
To find a term for the rest of everybody.
We do have, yeah.
We do have to say though that there isa certain group that are a little bit
away in their own center of things inthe data . I think in a way what we're
(08:54):
doing here, Jackie, is we're remindingpeople under this label that we use
now of the Neurodivergent group withinNeurodiversity, neurodiversity covering
the whole of the population, that theneurodivergent group includes people.
Jackie-Edry (09:12):
Mm-hmm.
With a
Jules-AutisticRadio.com (09:13):
brain injury and that people with brain
injuries can experience life.
Jackie-Edry (09:19):
Yeah.
Jules-AutisticRadio.com (09:20):
Newly.
Often in ways that remind them ofthings like a DHD, autism and the
other versions of Neurodivergence.
Yeah,
Jackie-Edry (09:30):
absolutely.
Absolutely.
Jules-AutisticRadio.com (09:33):
So you, you, you are a recovering grain injury person.
Having that tumor's been taken out,they've probably took out quite a section
of your brain at the same time, I suppose.
Jackie-Edry (09:46):
I don't think so, but it was, they took, they took the tumor and
some of the things around the tumor.
And I actually still have a bit of tumorin my brain because, because it couldn't
remove it all because it was on mybrainstem and all the central nerves, uh,
run through the brainstem and some of ranthrough right the center of the tumor.
I was left with physicaldisabilities and sensory differences.
(10:11):
Fortunately, it was in an area of mybrain that was not near my cognition,
so my cognition wasn't affected.
The first part of my book, I talka little about me and, and about.
All different senses and give a lotof practical knowledge to help people
understand what sensory processing is
and some tools , to help help people,,regulate , make their lives easier
(10:32):
living with sensory processing issues.
Jules-AutisticRadio.com (10:34):
The first thing that strikes me and, and is a curious
thing about how you feel about the conceptof brain plasticity because when, when
people have a trauma to their brain,
Jackie-Edry (10:48):
okay,
Jules-AutisticRadio.com (10:49):
we are often led to the idea that recovery
and rebuilding various partsof, um, a person's abilities is.
The brain adapting and different parts ofthe brain being used in different ways to
compensate and change it's a plasticity.
(11:12):
A plasticity in the way thatmoldable, I think is the, is
the way plasticity is used.
Mm-hmm.
Modifiable.
So is that your experience?
Jackie-Edry (11:24):
Uh, brains are, I have quite a bit of knowledge about
brains and I'm learning all the time,especially with the professor who was
working with my son for many years.
We're gonna be launching some.
Some projects together, God willing,in the near future, , but also in,
in my experience, both observingit in the, the Foresting Institute
in Jerusalem where my son was.
(11:46):
They have the department for brain injury,but also in just working with with kids
over the years, whether or not be injuryor just any kind of area that needs to
improve and brains build new connections.
All the time, I have seen people afterterrible injuries, brain was basically
(12:06):
outside of their, their skull, parents,, were asked to sign them, their organs,
they actually managed to recover oftheir language, the center of the
brain, let's say, was, was destroyed.
And they now speak fluently.
It takes a really long time, right?
, It's a process.
You need to work on brains.
I've seen people every age, no matterwhat the, the Fostein Professor Rubin
(12:30):
Fostein blessed be his memories.
Philosophy was, no matter what,what state you're in or what
age you're at or whatever, youcan always change and improve.
And then it's absolutely the case.
I have seen it so many times and I'veexperienced it firsthand, but , you
can't, , make it happen quickly.
Neural pathways needs tobe built and, organized.
And cognition needs to be organized,and sensors need to be organized.
(12:53):
So all these thingstake a really long time.
And I think one of the things that arevery problematic in a lot of the ways
the treatments, the professionals whenthey work , let's say you've taken an
autistic kid that's a nonverbal, and they,they want you to progress as specific
rate, , and if you do it slower, thenthey think the treatment's not working.
It's important to understand that these,cognitive building blocks need to put
(13:16):
in place and , they take a really longtime, but once they're in place, then
, the sky can be the limit, but there'sthe absolute neuroplasticity out there.
Absolutely.
Jules-AutisticRadio.com (13:26):
Remember, I might take quite a , long
time , to get my words together.
I'm an autistic man, and, andyou're gonna experience quite
long silences from me, okay?
Just tolerate me, I'lltolerate me on that.
Jackie-Edry (13:41):
Okay?
That's, I don't need to tolerate that.
First of all, there'snothing wrong with that.
Second of all, I, perhaps it has todo with auditory processing issues.
My son has very severe auditory processingissues we've got him loing hearing aids
and it's changed his life completely.
It's really helped him process whathe is hearing and make sense of it and
(14:04):
sped up his ability to respond becausehis processing has improved incredibly.
, These are things I talk aboutto help people , to realize
and make their lives easier.
Jules-AutisticRadio.com (14:13):
So from my point of view, I would like to try and
simplify this for my own understanding.
A, a person who's received traumato their brain and the brain
has been significantly changed.
You are putting forward with time.
The brain can adaptplasticity of the brain.
(14:34):
Changes can happen.
As though you are putting forward theproposition that an autistic child
is analogous to a damaged brain.
And that that too with time can bemodified and its plasticity will mean
that that child will be able to adaptin certain ways to be less autistic.
Jackie-Edry (14:58):
I wouldn't, I wouldn't use that terminology.
I don't think that it's,I do think it's different.
I think brains are so complexand, and there are different
ways of thinking communication.
For example, my son.
I know he thinks inpictures, not in language.
He has fairly minimal verbal skills.
(15:19):
He doesn't tend to speak in long sentencesand he, but I know he's thinking,
let's say he's got two languages, threelanguages because he thinks in pictures
and he thinks in Hebrew, and then hethinks a little bit in English as well.
And he is got auditory processingissues and all kinds of other issues.
But I wouldn't use the word damaged.
(15:39):
He is different.
I think neuroplasticity will helphim build new connections in his
brain to make the areas that arehaving challenges that make his
life difficult, to streamline thoseconnections and make it easier for him.
But I definitely, I wouldn't, Iwouldn't go for the damage I don't
(16:00):
like the medical model, and I alsothink people's brains are different
because some people think logically.
And some people think associativelyand some people think both like
me, I, I'm logical and associativeso I can be all over the place.
And then sometimes people have ahard time following me, although
it's very streamlined for me.
We're all made up very differently, butwhen the differences cause challenges
(16:25):
or the person who's living with thosedifferences to be uncomfortable, then
we need to work on that to improvetheir quality of life, not to make them.
Not appear what they are.
My, my son is autistic and he willalways be autistic, but he can
learn skills to make it easier forhim to communicate what he wants
to communicate and succeed in life.
(16:47):
My brain is now.
Different and, and my sensitivitiesare hyper hypo and all kinds of, I, I
have a lot of scramble center input,but now that I have earline lenses and
I, I know how to regulate things, I canmake my quality of life much better.
It's not curing an illness and it'snot damaged, but it is different
(17:11):
and we need to find ways to.
Allow a person to communicateas effectively as they can
so that they feel good.
Because if a person doesn't communicateeffectively, it's frustrating and to
achieve their dreams and the qualityof life that they're looking for.
And then that's my aim andthat's my outlook about it.
Jules-AutisticRadio.com (17:28):
I think as an autistic man, you will understand what
I was trying to give you the opportunityto say, and I think you said it rather
beautifully, there, there is no wayin the world that I believe that your
son is damaged, and there is no wayin the world that I experienced life
believing that I am damaged at all.
Okay.
Jackie-Edry (17:48):
Yeah.
Thank you.
I was absolutely.
Sure that you wouldn't think of it asdamaged, but unfortunately the medical
model, and unfortunately so manyprofessionals, he's now 27, my son.
And if I tell you the amount of timesthat we have had people say the most
terrific things to us about him andor assume that he didn't understand
(18:08):
anything because he couldn't speak, oryou know, they treated him as, as such.
, I'm definitely sensitive about that, , and I also know what it feels like.
I had very serious difficulty speakingafter my surgery, certainly for the
first months , I was mostly quiet mynerves were definitely on end as my
(18:28):
brain was trying to reorganize itself.
In a waiting room, the doctor's, aneurologist's office with my husband,
and he just looks at my husband and says,oh, was she like this before her surgery?
It's like, so, so I've, I'm so usedto having professionals, whether it be
medical or educational professionalsthat tend to see people who are neuro
(18:53):
distinct as deficient or damaged.
I just wanna clarify for thepeople listening my viewpoint
. Jules-AutisticRadio.com: That's wonderful.
There's a subject I want to broach withyou, it's three letters, A, B, A. Can
you give me a perspective on how A, B, Atouched either your own life or your son's
(19:18):
life, or anyone around you so that I canunderstand something about that context?
I have to think about it for a second, how to answer that,
that that's a difficult question.
, When I was in high school, I workedwith a young boy . We, we used to do
child centered educational settingwith him, and he was a beautiful,
(19:41):
young, young kid working with himthrough play and, and, and things like
that to teach him how to communicate.
He was a non-verbal autistic,and I worked with him for a few
years and then I went to college.
And I started working in summercamp with autistic adolescents and
we used to do incredible things,whitewater, canoeing, and these
(20:02):
kids were nonverbal, most of them.
And they had serious challenges,but we found that we could do almost
anything with them and, and upstateNew York, sitting, you know, just,
just wonderful things we did with them.
And it was all very natural.
All our interactions were very naturaland everything went with the flow and,
and we found they developed beautifully.
I worked the same kids for three years.
(20:23):
I. And I noticed that their exerciseduring the summer camps helped reduce
some of their stimming I decidedto do a study to see how exercise
affects stemming for my thesis.
I got accepted at a school, whichwas one of the first schools
at the time, I'm talking 87.
(20:43):
86 actually, and it was a behaviormodification school, which is now.
I was calling back then behaviormodification, except now it's ABA
and I had no idea what the school wasand where, what it was gonna be like.
In any case, I'm assuming I'm just gonnago there and do my exercise program.
And what happened was I, I went thereand lo and behold that young boy that I
(21:04):
had worked with, and it was a completelydifferent state and it was years
later, was in the school and he was.
Frustrated and angry and self-abusive.
And he was still doing the same sortof things that we'd been doing with
him when he was five and he was now 13.
And it broke my heart.
And, and also there was nospontaneity with those kids.
(21:27):
It was, it was say something,it gave them a task.
Give them an m and m. Uh.
Sign and speak, not nothing spontaneous.
Could be everything was, was forrewards , it just broke my heart.
, I was beyond, uh, shaken up and, uh,and so I changed my thesis to developing
(21:48):
more are, , child-centered, , naturalapproaches to working with kids with.
Autism or developmental disabilities, that's what happened way back then.
And I was very, very firm after Irealized I was there for six months.
And I, I, it, it, it was, I learnedwhat, how to do it and what to do
and, and I could not do it myself.
I, I got out of there as quickly as Icould because I just felt I couldn't be
(22:12):
complicit to doing these things to thesechildren that, that I didn't believe in.
It was a very hard time in my life and.
Then years later, my son wasborn, and of course, ABA is
developed into this whole industry.
And people tried to convinceme to do that with him.
And I knew, and thatthat was a, a blessing.
That was, I really believe God, uh,really was looking out for us because
(22:36):
I had that experience beforehand.
Because if I hadn't, I probably,he would've been turned into a
very frustrated individual andso would I, and we wouldn't have
had the nice life that we have.
By not going down that route.
The, the teaching of complianceand the not teaching of how to have
(22:59):
normal social interactions becauseeverything is based on, uh, rewards
or punishments or ignoring, plannedignoring or whatever it may be.
Everything is for something and thereis no spontaneity and relationships
doesn't facilitate building.
Relationships I've met many, manyadults who have had experience
(23:19):
with ABA who have been traumatized,seriously traumatized by it.
And many kids who have undergone ABAwho have, no initiative they don't
initiate because they're afraid tomake mistakes because you either
do it right or you do it wrong.
Life is a gray area.
Most things aren't right or wrong.
, So they're always waiting for someone totell 'em what they should be doing because
(23:41):
they don't wanna do the wrong thing.
So I found it, it's a very painfultopic for me, and I do speak out.
, If a person has sensory overwhelmand someone is forcing them to do
something, , it could break them,it could break them, it could break
their spirit and could traumatize 'em.
And that's been my experience, , withABA, which is why I am vocal about it.
(24:01):
And I don't.
Any, any hesitancy people get angryat me, that I'm against it, but
I, I've seen the damage firsthand.
Jules-AutisticRadio.com: Thank you, Jackie. (24:09):
undefined
I hope I didn't push you.
Jackie-Edry (24:12):
No, that's fine.
Jules-AutisticRadio.com (24:14):
Now there are some other words.
There's the concept of the science ofbehaviorism and I'm led to believe that
behaviorism a very new science, which.
Tries to look at how humanbeings manifest through behavior.
(24:34):
And some would say there aredifferent programs that came, come
from behaviorism that are childcentered and supportive of the child.
Is it the case for you that theword behaviorism is entirely
wrapped up with the concept of ABA.
Jackie-Edry (24:54):
ABA is the new name, the more scientifically charted behaviorism.
And behaviorism is something that camefrom, you know, Skinner and, and Lovas.
As a person who has a great love ofdogs and has had dogs all my life and
worked with dogs and I've trained dogs.
I very much felt, when I was seeing thingsdone with behaviorism, that was very much
(25:18):
the way you work with the dog, right?
You do this, you get a reward,and many times it's food, it,
it ignores the humanity and itignores the soul of the person.
We are not stimulus response,which is behaviorism.
We are human.
We have souls.
(25:39):
We have.
Feelings.
We're complex individuals.
We have histories.
, We are just not a stimulus response.
There's so much more involvedfor any decision we make or
any reaction that we have.
Reducing a person into a system ofbehaviors, , of stimuli and response,
then you are taking away a lotof their humanity and their soul.
(26:00):
And if you, if you.
Insist that they function that way.
They will eventually do it,but it will take away part of
their humanity and their soul.
That's the way I feel about it.
Jules-AutisticRadio.com (26:11):
Thank you.
When you, when you were describing the,the application of ABA it seemed to
me that you were describing coercivecontrol in action on children.
That was the way the, the older formsof ABA were behavior modification.
(26:33):
Rewarding a child when it does the things that you are
aiming for, this carrot and stick mm-hmm.
Approach, the naughty step,all those kind of things.
That is a description tome of coercive control.
Jackie-Edry (26:47):
Yeah.
Jules-AutisticRadio.com (26:47):
That I thought we'd left behind in the past.
Jackie-Edry (26:49):
No.
Jules-AutisticRadio.com (26:50):
And then the question I asked you was about whether
there was any differentiation in yourmind between the concept of behavioral
science described by Skinner and ABA,and you immediately come back to, to
say that as far as you are concerned.
(27:12):
There is no differentiation betweensomething people like to describe
as behavioral science and ABA.
Am I clear on that?
Jackie-Edry (27:22):
I think, again, it started ABA stemmed out of that original Skinner
type thing, it's become more scientific,it's much more documented, charted
whatever, but it, breaks people's intolittle categories and checklists and tasks
.Rewards and punishment the nicer ones, they don't do punishment, , but it,
(27:42):
it creates an artificial environmentit doesn't teach social skills in a
manner that is natural so that theperson often comes out like robotic
and after years of ABA and, andbecause they haven't learned social.
(28:05):
Natural social interactions.
Things don't happen in such setenvironments or patterns, and then they
don't necessarily transcend and generalizeout of the setting, the clinical setting.
My son was in elementary school, wenever did ABA with him obviously.
(28:25):
But there was a woman that came intoschool and she started advising people and
she wanted to teach social interactions,which is the main reason he was in,
inclusion in schools, a one-to-oneassistant, even though he, uh, he had a
very big, uh, educational gap we wantedto, to learn to be around kids that he
could learn social interactions with them.
So the woman wanted him, she wasvery behavioristic, and she said,
(28:49):
let's teach him social stories.
So I said, okay, how do you wanna do that?
She says, well, we'll have , hisassistant, teach him a number of
lines of things to say, she coulduse the stories and he's gotta
memorize these lines and then go upto other kids and say those lines.
I said, wait, wait a minute.
What do you mean?
, Every time he sees a child, he'sgonna come up and say this line.
So he's gonna becomelike , a programmed robot.
(29:09):
Plus you don't do that with, , youknow, normal social interactions.
You don't do that.
That's what she was trying to teach him.
And I said, you know, no way.
Don't even think about you.
I, I would assume is teachingsocial interactions doesn't
have anything to do with that.
And no.
So that, that's the kind ofthings I, I find going on today.
(29:29):
And even though things getremarketed in, in different names
and, and all this other stuff,
anything that stems fromthat I think is problematic.
And, and it's also used in, insometimes in regular schools with
kids where they start doing points,charts with all this other bologna.
And then the kids, I found my kids hadbehavioral problems when the teacher
would start doing point systems for themto get a prize at the end of the week.
(29:52):
And then you ask 'em to do a chore andthey'd say, well, what are you gonna do?
What are you gonna give mefor, you know, kind of thing.
So any, anywhere that people, thesethings are used in a systematic way,
in my opinion, creates a major problem.
They're not spontaneousand they're not natural.
Jules-AutisticRadio.com (30:06):
Repeating things is often quite annoying to
people, but I'm still gonna do it.
As far as you are concerned, anythingthat associates with the original ideas
or anything that is a science around theidea of behaviorism, behavioral science.
(30:32):
Is conflated with ABA thatyou have clearly described as
a system of coercive control.
Yes.
Is that correct?
There's no other, there's no other version
Jackie-Edry (30:47):
there are a lot of versions, but the question is, what's, what's
the point , first of all, it, it, it.
Takes away the person's identity andtrying to shape them and mend them
into something that they are not.
Behavior science is a huge thing.
I mean, there's, it has, uh, uh, ifyou're talking about the kind of therapies
done with an autistic child under this,any kind of behaviorist program, yes.
(31:10):
I have a definite aversion to that.
And I think it's all connected.
And it's sometimes remarketedbecause there was a lot of
backlash, but behavioral.
Science can be about anything andnot having anything to do with
that, but just the study of howpeople interact with each other.
But anything that is Skinner like Lovaslike or stems from that, I believe is the
(31:33):
initial premise of trying to teach, makepeople what they're not, and to teach
people to mask, which has a tremendous.
Negative effect on them in the longrun and causes burnout and causes
feeling of failure and causes lackof self-image, positive self-image.
And I can go on and onand on and on and on.
(31:54):
I, I do have a serious problem with that.
That's not to say that if a person,let's say, I'll just my sound for an
example, because it's, it's easy if hischallenges as, as being autistic are
getting in the way of his quality of life.
I'm not gonna say, okay, just do asit in the, sit in the corner all
(32:15):
day and do what you feel like doing.
But I, I won't go about it bythe way you're talking about it
rather meet him where he's at.
Communicated with him on things that areinteresting to him and gradually pull
him to me and to interact with me bybuilding trust and, and having fun and,
and playing and being, you know, naturalthe way a, a typical baby would go through
(32:39):
the different stages of development.
So I would start with getting allthose prerequisites into, , into
place , and building cognitive.
Building blocks and social building blocksand taking the time to do things slowly.
'cause I don't want him to be in asituation where he can't communicate his
needs and, and then he'll be frustrated.
(33:00):
But to sit down and, and, and, and saythe same word 50 times and memorize lists
and lists of words, that has nothingto do with communication as far as I'm
concerned, that has sitting in a room andlearning lots of words and flashcards.
But what does it haveto do with real life?
So I'll take him and walk down thestreet with him and point to every single
thing that I see on the street and talkabout it and its history and what it
(33:22):
looks like and what you can do with him.
And that's the way I'll teach him thosewords, but I'm not gonna teach him a bunch
of flashcards and they get a prize for it.
That doesn't make sense in reality.
I wouldn't do it to aa per se regular child.
If somebody would do that to me, Iwould probably get up and swat them.
So why would I do it to a child who has.
(33:43):
Challenge of any way or a disabilityof any way which, and he cannot make
his need or, or he cannot protestin the way that typical child would
protest if you're doing somethingto them that that is damaging.
That makes sense.
Jules-AutisticRadio.com (33:57):
It makes perfect sense to me.
So going back to the plasticityof the brain again, because it
has been put forward almost inthe Jesuit way, give me a child at
seven and I'll give you the man.
If you can train a child up until apoint, it will always be with them.
(34:18):
I think is one of the, uh,interpretations of that returning
to the plasticity of the brain.
You are not saying that people don'thave the opportunity and support.
To make changes, learn new skills,learn to be able to, I think what
(34:41):
you said was communicate theirneed, and so they need methods and
supports to be able to do that.
You're not saying that there isn't aa way to approach this, which means
that the plasticity and adaption ofthe brain can improve somebody's life.
(35:03):
You're not saying that.
But what you are saying is thateverything to do with the word
behaviorism is associated for youwith this coercive control, A, B,
A that we've seen demonstrated.
Again, again, stop the shock ban A, B,A and everything that looks as though it
(35:28):
comes from a stem of behavioral science.
In your mind is a repackaging in the a, b,A industry that uses children and adults
as fodder for an industry of moneymaking.
All of that, in a nutshell, that's notputting any words in your mouth, is it?
Jackie-Edry (35:50):
You know, it's real hard to categorize in me and I, I am sure
that there are exceptions and I am.
Perhaps some people that are usingsome of the ABA techniques, who knows?
Maybe, you know, I, I don't know.
But, but more or less, more or less,I guess it's become like an industry.
It's become an industry.
It's become a cult in a lot of ways.
And if you say anything or ask questionsabout it, then, then often people get
(36:12):
attacked or asking questions about it.
When I, in the beginning, uh, when I,when I went and, and I was writing and
I. I was told, don't say anything aboutABA 'cause you know, no one wanna buy
your book, you know, it will put me ona black list and, and stuff like that.
And I, I, I follow my truth.
I don't, I don't care whatanybody has to say really.
(36:33):
If it doesn't sit well with my conscious,then not, then I'm not gonna say
it or do it, you know what I mean?
So I, again, I don't feel that'shumanistic and, and, and I see the way
it's taught in schools, my daughter.
A number of years ago went to learnspecial education, and I saw what
they were teaching her and, and howthat she, part of her training was
(36:56):
learning about behaviorism and, and,and, and autism and, and the things
that I saw just made my hair stand up.
So even though they say it might bemore the new kinder form, I have yet
to see that I, I, I don't see thatperhaps it exists, but I have yet to
encounter it firsthand, and I don't seeit teaching the skills that people need.
(37:17):
To give them the qualityof life that they need.
Jules-AutisticRadio.com (37:20):
Thank you, Jackie, for dealing with this difficult
subject with me today on autistic radio.
I hope that you have felt that what Ihave done here is listened and given you
the opportunity to speak out your truth.
(37:42):
The listener will take in.
What they've heard and make theirown mind up from what they hear.
It's not up to us to directthem to what they think.
Jackie-Edry (37:59):
Yeah,
Jules-AutisticRadio.com: there's, I agree with that. (38:00):
undefined
There's quite a lot more thatI want to speak to you about.
'cause I'm only on the first, I'mnot even on page 30 of your book yet.
Jackie-Edry (38:13):
Mm-hmm.
Jules-AutisticRadio.com (38:15):
Is there a chance in the future that you
will return to us here on ArtisticRadio and talk a little bit more and
expand upon the rest of your book?
Jackie-Edry (38:26):
I have to say that it has been fascinating and a
pleasure to, uh, to speak with you.
Very, very interesting and, andI've enjoyed this conversation and
enjoyed speaking about difficulttopics because I think that.
It gives people the opportunityto, to learn and understand things
from different perspectives.
And then if we facilit that dialogue,then, then I think everybody benefits
(38:51):
from hearing all, all differentsides of things so that you're not
afraid to go down that road and askdifficult questions is, is fantastic.
And keeping with that, I'd loveto, to meet with you again and,
and get to know you better.
And speak further and, andtalk about whatever topics you
think are relevant for sure
(39:11):
Autistic radio is about us.
It's for us, and it's from us.
Autistic Radio is about you.
It's for you, and it can be from you.
We have every single Sunday dropin four, four 4:00 PM every Sunday.
(39:37):
That's not live.
That's us getting together,us talking community.
Every Sunday, Harry leads a fivefive 5:00 PM a discussion around
the Facebook page that he creates.
Involve yourself by suggestingwhat we should talk about next.
(40:00):
Share it with Harry and.
The bigger picture, advocate, use us.
Speak to the world, your project,your idea, your enthusiasm.
We have a whole range of differentprograms that will fit what you want.
(40:24):
As far as listening goes, there'ssome challenging stuff out there.
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals challenging
(40:45):
their ideas and bringing whatyou say in other spaces to them.
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
Autistic radio is very varied.
(41:06):
We need a favor to encourage us.
We need you to share us.
When you share us.
You give autistic people power.
When you share us, you makeus impossible to ignore.
When you repost on LinkedIn and Facebookand anywhere else, you are advocating
(41:33):
for everybody in the autistic community.
So pick the things that you arehappy with and get them out there.
So thank you, thank you, thankyou, thank you from all of us.
We speak our words, we listen,we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
Jules-AutisticRadio.com (00:18):
The perspective that you have that
is different from most people.
One is that you have an autisticchild and you have had to navigate
that autistic child through someof the different ways that autism
professionals have tried to influence.
(00:41):
So there's that.
There's that mom who is mm-hmm.
Trying to work through.
The best for their child.
Jackie-Edry (00:51):
Mm-hmm.
Jules-AutisticRadio.com (00:51):
And it comes from what it looks like in opposition to some
of the autism professionals out there?
Jackie-Edry (00:59):
Oh yeah, most of them.
Okay.
Jules-AutisticRadio.com (01:01):
Yeah.
Jackie-Edry (01:02):
Especially if they do things like ABA.
Oh yeah.
I'm very vocal about that.
Totally anti, yeah.
Jules-AutisticRadio.com (01:09):
I have a project here that is controversial because we are.
We are dealing with the ABAcommunity here, here, over in the uk.
Jackie-Edry (01:22):
Okay.
Jules-AutisticRadio.com (01:22):
We, we are speaking directly to them and
mm-hmm we are allowing them tocome and make recordings with us.
Jackie-Edry (01:31):
Okay.
Jules-AutisticRadio.com (01:32):
And in some ways you could say that we are platforming the.
Behavioral science community, andI, you hear the way that I describe
that behavioral science community.
Mm-hmm.
So, so that is a very vulnerableposition that I have put this
project in by doing that.
Jackie-Edry (01:54):
Okay.
Jules-AutisticRadio.com (01:55):
And the reasoning that I have behind that is
because there are already enough peoplewho are creating the, the protest.
There are already enough people whoare ensuring that the, the perspective
(02:16):
that behavior modification andthe creation of masking strategies
within children is inappropriate and
Jackie-Edry (02:28):
mm-hmm.
Jules-AutisticRadio.com (02:28):
O other words that I'm not going to say at the moment.
Okay.
There are other people doing that.
Jackie-Edry (02:33):
Mm-hmm.
Jules-AutisticRadio.com (02:35):
And
Jackie-Edry (02:36):
Right.
Jules-AutisticRadio.com (02:36):
I have taken the rather controversial step of
speaking to them directly and mm-hmm.
Gaining some kind of trust and confidencein them that they will be able to speak
freely and it's only when they speakfreely, in my opinion, that they will
have any chance to access the autisticexperience from our point of view.
Jackie-Edry (03:02):
Mm-hmm.
Jules-AutisticRadio.com (03:03):
Does that make in, does that make sense to you
Jackie-Edry (03:05):
Yeah, I think that that open dialogue is really, very important.
And there's a, a very fascinatingman, his name is Scott Fraser.
, ,Jules-AutisticRadio.com: We recently recorded with him, and he's going
to be making a series of podcastswith us and, and work with us.
Brilliant.
So, that's what he does.
He, he, he, he asks questions and allowseverybody to speak, and he is fantastic.
(03:29):
I learn a lot from him and, and so, yeah.
Good.
I think that's very important.
And then I, I also will speak to anybody,when I was in college, , I did a research
project and it turned out it was in abehavior modification school, which was,
now, you know, the name is ABA, but at thetime it was called behavior modification.
And I had firsthand experienceof what, what it's like to
(03:51):
be on the other end, right.
It didn't sit with me particularly becauseI had worked with a young boy from the
time when I was in high school and for anumber of years, and we did child centered
approaches , and he was doing great.
I lost track of him for a numberof years , and then I found him.
Our conversations here on autisticradio are personal and informal.
(04:13):
Please don't imply if somebodymentions an organization, they're
not representing that organization.
It's all personal comments.
They speak with theirown words for themselves.
Jules-AutisticRadio.com: Welcome back to Autistic Radio. (04:27):
undefined
I want to emphasize to you the listener.
That it's a privilege for us tohave your time, your commitment
to listening to us matters to us.
I have somebody with me today to introducein our short introduction series.
(04:50):
Jackie EDRi is the mum of an autisticperson, and she's also written a
book that I've started to read.
It was only in the first few minutesof reading the book that I have to say
that there was some emotion for me andsome tears pricked in my eyes because
(05:15):
of the, the feeling of empathy for oneof the children that she described.
I would like to just ask Jackieto tell you a little bit about
what she's done, what she's doing,and what she sees the future.
Hi, Jackie, please tell usa little bit about yourself.
Jackie-Edry (05:36):
Hi, thanks so much for having you.
I'm, I'm greatly honored to be here.
, As you said, I'm, I'm the privilegedparent of a autistic son and other
neurodivergent kids with a varyingdiagnosis, whether it be a DHD,
dyslexia, Alan Syndrome, and allvarying forms of Neurodivergence
from the time I was in in high school,and that was a really long time ago, I,
(05:58):
I worked with kids on the spectrum andmy thesis in college also to do with
programs for educating autistic kids.
My son was born many years later.
As he was growing up and, and thechallenges that we faced, , not
raising him, rather dealing with , thesystems that we'd had to deal with, uh,
education and advocating for his rights.
I started to become a parentadvocate, working with parents,
(06:21):
training professionals.
And then 11 years ago I had a massive, uh,tumor discovered on my brainstem and I.
Had, uh, surgery, very dangerous surgery,when I woke up, all of my senses were
scrambled and I definitely , became muchmore neuro distinct than I already was
(06:42):
beforehand, especially with living with asensory environment that was disorganized
and frightening, and I had to learn howto do walk, talk, function all over again.
What I discovered from being on bothsides of the coin, whether it was
parent, caretaker or professional,to now having a brain that was trying
(07:06):
to cope with sensory dysregulation,disorganization in terms of my body and
my brain, sometimes engaged my mouth,words would get stuck, stutter, et cetera.
That I was now on both sides ofcoin, and I gained a lot of insights,
what it was like, because the thingsthat I had been observing all along
(07:27):
and thinking that I understoodnow, I was experiencing firsthand.
And so what I decided to do was helpothers with those insights, and that's
why I decided to write a book andstart that journey of linking up with.
People from around the world and, andspeaking and writing and blogging and,
and doing everything I can to helpfacilitate understanding and improve
(07:53):
the quality of lives for autisticor neuro divergent individuals and
their families and caretakers alike.
Jules-AutisticRadio.com: That's quite a lot. (08:00):
undefined
That's quite a lot.
Such an interesting situation.
We're kind of reminding peoplehere that neurodiversity covers
the whole of humanity, but thatthe neurodivergent tag that we use
covers people who have a significantdifference from what we call might call.
(08:25):
The, the majority populationor the average, I'm not
gonna use the word normal and
Jackie-Edry (08:32):
mm-hmm.
Jules-AutisticRadio.com (08:33):
You, yeah.
And I don't even know what, howaverage, average is, but yeah.
It's almost impo.
Yeah.
To find a term for the rest of everybody.
We do have, yeah.
We do have to say though that there isa certain group that are a little bit
away in their own center of things inthe data . I think in a way what we're
(08:54):
doing here, Jackie, is we're remindingpeople under this label that we use
now of the Neurodivergent group withinNeurodiversity, neurodiversity covering
the whole of the population, that theneurodivergent group includes people.
Jackie-Edry (09:12):
Mm-hmm.
With a
Jules-AutisticRadio.com (09:13):
brain injury and that people with brain
injuries can experience life.
Jackie-Edry (09:19):
Yeah.
Jules-AutisticRadio.com (09:20):
Newly.
Often in ways that remind them ofthings like a DHD, autism and the
other versions of Neurodivergence.
Yeah,
Jackie-Edry (09:30):
absolutely.
Absolutely.
Jules-AutisticRadio.com (09:33):
So you, you, you are a recovering grain injury person.
Having that tumor's been taken out,they've probably took out quite a section
of your brain at the same time, I suppose.
Jackie-Edry (09:46):
I don't think so, but it was, they took, they took the tumor and
some of the things around the tumor.
And I actually still have a bit of tumorin my brain because, because it couldn't
remove it all because it was on mybrainstem and all the central nerves, uh,
run through the brainstem and some of ranthrough right the center of the tumor.
I was left with physicaldisabilities and sensory differences.
(10:11):
Fortunately, it was in an area of mybrain that was not near my cognition,
so my cognition wasn't affected.
The first part of my book, I talka little about me and, and about.
All different senses and give a lotof practical knowledge to help people
understand what sensory processing is
and some tools , to help help people,,regulate , make their lives easier
(10:32):
living with sensory processing issues.
Jules-AutisticRadio.com (10:34):
The first thing that strikes me and, and is a curious
thing about how you feel about the conceptof brain plasticity because when, when
people have a trauma to their brain,
Jackie-Edry (10:48):
okay,
Jules-AutisticRadio.com (10:49):
we are often led to the idea that recovery
and rebuilding various partsof, um, a person's abilities is.
The brain adapting and different parts ofthe brain being used in different ways to
compensate and change it's a plasticity.
(11:12):
A plasticity in the way thatmoldable, I think is the, is
the way plasticity is used.
Mm-hmm.
Modifiable.
So is that your experience?
Jackie-Edry (11:24):
Uh, brains are, I have quite a bit of knowledge about
brains and I'm learning all the time,especially with the professor who was
working with my son for many years.
We're gonna be launching some.
Some projects together, God willing,in the near future, , but also in,
in my experience, both observingit in the, the Foresting Institute
in Jerusalem where my son was.
(11:46):
They have the department for brain injury,but also in just working with with kids
over the years, whether or not be injuryor just any kind of area that needs to
improve and brains build new connections.
All the time, I have seen people afterterrible injuries, brain was basically
(12:06):
outside of their, their skull, parents,, were asked to sign them, their organs,
they actually managed to recover oftheir language, the center of the
brain, let's say, was, was destroyed.
And they now speak fluently.
It takes a really long time, right?
, It's a process.
You need to work on brains.
I've seen people every age, no matterwhat the, the Fostein Professor Rubin
(12:30):
Fostein blessed be his memories.
Philosophy was, no matter what,what state you're in or what
age you're at or whatever, youcan always change and improve.
And then it's absolutely the case.
I have seen it so many times and I'veexperienced it firsthand, but , you
can't, , make it happen quickly.
Neural pathways needs tobe built and, organized.
And cognition needs to be organized,and sensors need to be organized.
(12:53):
So all these thingstake a really long time.
And I think one of the things that arevery problematic in a lot of the ways
the treatments, the professionals whenthey work , let's say you've taken an
autistic kid that's a nonverbal, and they,they want you to progress as specific
rate, , and if you do it slower, thenthey think the treatment's not working.
It's important to understand that these,cognitive building blocks need to put
(13:16):
in place and , they take a really longtime, but once they're in place, then
, the sky can be the limit, but there'sthe absolute neuroplasticity out there.
Absolutely.
Jules-AutisticRadio.com (13:26):
Remember, I might take quite a , long
time , to get my words together.
I'm an autistic man, and, andyou're gonna experience quite
long silences from me, okay?
Just tolerate me, I'lltolerate me on that.
Jackie-Edry (13:41):
Okay?
That's, I don't need to tolerate that.
First of all, there'snothing wrong with that.
Second of all, I, perhaps it has todo with auditory processing issues.
My son has very severe auditory processingissues we've got him loing hearing aids
and it's changed his life completely.
It's really helped him process whathe is hearing and make sense of it and
(14:04):
sped up his ability to respond becausehis processing has improved incredibly.
, These are things I talk aboutto help people , to realize
and make their lives easier.
Jules-AutisticRadio.com (14:13):
So from my point of view, I would like to try and
simplify this for my own understanding.
A, a person who's received traumato their brain and the brain
has been significantly changed.
You are putting forward with time.
The brain can adaptplasticity of the brain.
(14:34):
Changes can happen.
As though you are putting forward theproposition that an autistic child
is analogous to a damaged brain.
And that that too with time can bemodified and its plasticity will mean
that that child will be able to adaptin certain ways to be less autistic.
Jackie-Edry (14:58):
I wouldn't, I wouldn't use that terminology.
I don't think that it's,I do think it's different.
I think brains are so complexand, and there are different
ways of thinking communication.
For example, my son.
I know he thinks inpictures, not in language.
He has fairly minimal verbal skills.
(15:19):
He doesn't tend to speak in long sentencesand he, but I know he's thinking,
let's say he's got two languages, threelanguages because he thinks in pictures
and he thinks in Hebrew, and then hethinks a little bit in English as well.
And he is got auditory processingissues and all kinds of other issues.
But I wouldn't use the word damaged.
(15:39):
He is different.
I think neuroplasticity will helphim build new connections in his
brain to make the areas that arehaving challenges that make his
life difficult, to streamline thoseconnections and make it easier for him.
But I definitely, I wouldn't, Iwouldn't go for the damage I don't
(16:00):
like the medical model, and I alsothink people's brains are different
because some people think logically.
And some people think associativelyand some people think both like
me, I, I'm logical and associativeso I can be all over the place.
And then sometimes people have ahard time following me, although
it's very streamlined for me.
We're all made up very differently, butwhen the differences cause challenges
(16:25):
or the person who's living with thosedifferences to be uncomfortable, then
we need to work on that to improvetheir quality of life, not to make them.
Not appear what they are.
My, my son is autistic and he willalways be autistic, but he can
learn skills to make it easier forhim to communicate what he wants
to communicate and succeed in life.
(16:47):
My brain is now.
Different and, and my sensitivitiesare hyper hypo and all kinds of, I, I
have a lot of scramble center input,but now that I have earline lenses and
I, I know how to regulate things, I canmake my quality of life much better.
It's not curing an illness and it'snot damaged, but it is different
(17:11):
and we need to find ways to.
Allow a person to communicateas effectively as they can
so that they feel good.
Because if a person doesn't communicateeffectively, it's frustrating and to
achieve their dreams and the qualityof life that they're looking for.
And then that's my aim andthat's my outlook about it.
Jules-AutisticRadio.com (17:28):
I think as an autistic man, you will understand what
I was trying to give you the opportunityto say, and I think you said it rather
beautifully, there, there is no wayin the world that I believe that your
son is damaged, and there is no wayin the world that I experienced life
believing that I am damaged at all.
Okay.
Jackie-Edry (17:48):
Yeah.
Thank you.
I was absolutely.
Sure that you wouldn't think of it asdamaged, but unfortunately the medical
model, and unfortunately so manyprofessionals, he's now 27, my son.
And if I tell you the amount of timesthat we have had people say the most
terrific things to us about him andor assume that he didn't understand
(18:08):
anything because he couldn't speak, oryou know, they treated him as, as such.
, I'm definitely sensitive about that, , and I also know what it feels like.
I had very serious difficulty speakingafter my surgery, certainly for the
first months , I was mostly quiet mynerves were definitely on end as my
(18:28):
brain was trying to reorganize itself.
In a waiting room, the doctor's, aneurologist's office with my husband,
and he just looks at my husband and says,oh, was she like this before her surgery?
It's like, so, so I've, I'm so usedto having professionals, whether it be
medical or educational professionalsthat tend to see people who are neuro
(18:53):
distinct as deficient or damaged.
I just wanna clarify for thepeople listening my viewpoint
. Jules-AutisticRadio.com: That's wonderful.
There's a subject I want to broach withyou, it's three letters, A, B, A. Can
you give me a perspective on how A, B, Atouched either your own life or your son's
(19:18):
life, or anyone around you so that I canunderstand something about that context?
I have to think about it for a second, how to answer that,
that that's a difficult question.
, When I was in high school, I workedwith a young boy . We, we used to do
child centered educational settingwith him, and he was a beautiful,
(19:41):
young, young kid working with himthrough play and, and, and things like
that to teach him how to communicate.
He was a non-verbal autistic,and I worked with him for a few
years and then I went to college.
And I started working in summercamp with autistic adolescents and
we used to do incredible things,whitewater, canoeing, and these
(20:02):
kids were nonverbal, most of them.
And they had serious challenges,but we found that we could do almost
anything with them and, and upstateNew York, sitting, you know, just,
just wonderful things we did with them.
And it was all very natural.
All our interactions were very naturaland everything went with the flow and,
and we found they developed beautifully.
I worked the same kids for three years.
(20:23):
I. And I noticed that their exerciseduring the summer camps helped reduce
some of their stimming I decidedto do a study to see how exercise
affects stemming for my thesis.
I got accepted at a school, whichwas one of the first schools
at the time, I'm talking 87.
(20:43):
86 actually, and it was a behaviormodification school, which is now.
I was calling back then behaviormodification, except now it's ABA
and I had no idea what the school wasand where, what it was gonna be like.
In any case, I'm assuming I'm just gonnago there and do my exercise program.
And what happened was I, I went thereand lo and behold that young boy that I
(21:04):
had worked with, and it was a completelydifferent state and it was years
later, was in the school and he was.
Frustrated and angry and self-abusive.
And he was still doing the same sortof things that we'd been doing with
him when he was five and he was now 13.
And it broke my heart.
And, and also there was nospontaneity with those kids.
(21:27):
It was, it was say something,it gave them a task.
Give them an m and m. Uh.
Sign and speak, not nothing spontaneous.
Could be everything was, was forrewards , it just broke my heart.
, I was beyond, uh, shaken up and, uh,and so I changed my thesis to developing
(21:48):
more are, , child-centered, , naturalapproaches to working with kids with.
Autism or developmental disabilities, that's what happened way back then.
And I was very, very firm after Irealized I was there for six months.
And I, I, it, it, it was, I learnedwhat, how to do it and what to do
and, and I could not do it myself.
I, I got out of there as quickly as Icould because I just felt I couldn't be
(22:12):
complicit to doing these things to thesechildren that, that I didn't believe in.
It was a very hard time in my life and.
Then years later, my son wasborn, and of course, ABA is
developed into this whole industry.
And people tried to convinceme to do that with him.
And I knew, and thatthat was a, a blessing.
That was, I really believe God, uh,really was looking out for us because
(22:36):
I had that experience beforehand.
Because if I hadn't, I probably,he would've been turned into a
very frustrated individual andso would I, and we wouldn't have
had the nice life that we have.
By not going down that route.
The, the teaching of complianceand the not teaching of how to have
(22:59):
normal social interactions becauseeverything is based on, uh, rewards
or punishments or ignoring, plannedignoring or whatever it may be.
Everything is for something and thereis no spontaneity and relationships
doesn't facilitate building.
Relationships I've met many, manyadults who have had experience
(23:19):
with ABA who have been traumatized,seriously traumatized by it.
And many kids who have undergone ABAwho have, no initiative they don't
initiate because they're afraid tomake mistakes because you either
do it right or you do it wrong.
Life is a gray area.
Most things aren't right or wrong.
, So they're always waiting for someone totell 'em what they should be doing because
(23:41):
they don't wanna do the wrong thing.
So I found it, it's a very painfultopic for me, and I do speak out.
, If a person has sensory overwhelmand someone is forcing them to do
something, , it could break them,it could break them, it could break
their spirit and could traumatize 'em.
And that's been my experience, , withABA, which is why I am vocal about it.
(24:01):
And I don't.
Any, any hesitancy people get angryat me, that I'm against it, but
I, I've seen the damage firsthand.
Jules-AutisticRadio.com: Thank you, Jackie. (24:09):
undefined
I hope I didn't push you.
Jackie-Edry (24:12):
No, that's fine.
Jules-AutisticRadio.com (24:14):
Now there are some other words.
There's the concept of the science ofbehaviorism and I'm led to believe that
behaviorism a very new science, which.
Tries to look at how humanbeings manifest through behavior.
(24:34):
And some would say there aredifferent programs that came, come
from behaviorism that are childcentered and supportive of the child.
Is it the case for you that theword behaviorism is entirely
wrapped up with the concept of ABA.
Jackie-Edry (24:54):
ABA is the new name, the more scientifically charted behaviorism.
And behaviorism is something that camefrom, you know, Skinner and, and Lovas.
As a person who has a great love ofdogs and has had dogs all my life and
worked with dogs and I've trained dogs.
I very much felt, when I was seeing thingsdone with behaviorism, that was very much
(25:18):
the way you work with the dog, right?
You do this, you get a reward,and many times it's food, it,
it ignores the humanity and itignores the soul of the person.
We are not stimulus response,which is behaviorism.
We are human.
We have souls.
(25:39):
We have.
Feelings.
We're complex individuals.
We have histories.
, We are just not a stimulus response.
There's so much more involvedfor any decision we make or
any reaction that we have.
Reducing a person into a system ofbehaviors, , of stimuli and response,
then you are taking away a lotof their humanity and their soul.
(26:00):
And if you, if you.
Insist that they function that way.
They will eventually do it,but it will take away part of
their humanity and their soul.
That's the way I feel about it.
Jules-AutisticRadio.com (26:11):
Thank you.
When you, when you were describing the,the application of ABA it seemed to
me that you were describing coercivecontrol in action on children.
That was the way the, the older formsof ABA were behavior modification.
(26:33):
Rewarding a child when it does the things that you are
aiming for, this carrot and stick mm-hmm.
Approach, the naughty step,all those kind of things.
That is a description tome of coercive control.
Jackie-Edry (26:47):
Yeah.
Jules-AutisticRadio.com (26:47):
That I thought we'd left behind in the past.
Jackie-Edry (26:49):
No.
Jules-AutisticRadio.com (26:50):
And then the question I asked you was about whether
there was any differentiation in yourmind between the concept of behavioral
science described by Skinner and ABA,and you immediately come back to, to
say that as far as you are concerned.
(27:12):
There is no differentiation betweensomething people like to describe
as behavioral science and ABA.
Am I clear on that?
Jackie-Edry (27:22):
I think, again, it started ABA stemmed out of that original Skinner
type thing, it's become more scientific,it's much more documented, charted
whatever, but it, breaks people's intolittle categories and checklists and tasks
.Rewards and punishment the nicer ones, they don't do punishment, , but it,
(27:42):
it creates an artificial environmentit doesn't teach social skills in a
manner that is natural so that theperson often comes out like robotic
and after years of ABA and, andbecause they haven't learned social.
(28:05):
Natural social interactions.
Things don't happen in such setenvironments or patterns, and then they
don't necessarily transcend and generalizeout of the setting, the clinical setting.
My son was in elementary school, wenever did ABA with him obviously.
(28:25):
But there was a woman that came intoschool and she started advising people and
she wanted to teach social interactions,which is the main reason he was in,
inclusion in schools, a one-to-oneassistant, even though he, uh, he had a
very big, uh, educational gap we wantedto, to learn to be around kids that he
could learn social interactions with them.
So the woman wanted him, she wasvery behavioristic, and she said,
(28:49):
let's teach him social stories.
So I said, okay, how do you wanna do that?
She says, well, we'll have , hisassistant, teach him a number of
lines of things to say, she coulduse the stories and he's gotta
memorize these lines and then go upto other kids and say those lines.
I said, wait, wait a minute.
What do you mean?
, Every time he sees a child, he'sgonna come up and say this line.
So he's gonna becomelike , a programmed robot.
(29:09):
Plus you don't do that with, , youknow, normal social interactions.
You don't do that.
That's what she was trying to teach him.
And I said, you know, no way.
Don't even think about you.
I, I would assume is teachingsocial interactions doesn't
have anything to do with that.
And no.
So that, that's the kind ofthings I, I find going on today.
(29:29):
And even though things getremarketed in, in different names
and, and all this other stuff,
anything that stems fromthat I think is problematic.
And, and it's also used in, insometimes in regular schools with
kids where they start doing points,charts with all this other bologna.
And then the kids, I found my kids hadbehavioral problems when the teacher
would start doing point systems for themto get a prize at the end of the week.
(29:52):
And then you ask 'em to do a chore andthey'd say, well, what are you gonna do?
What are you gonna give mefor, you know, kind of thing.
So any, anywhere that people, thesethings are used in a systematic way,
in my opinion, creates a major problem.
They're not spontaneousand they're not natural.
Jules-AutisticRadio.com (30:06):
Repeating things is often quite annoying to
people, but I'm still gonna do it.
As far as you are concerned, anythingthat associates with the original ideas
or anything that is a science around theidea of behaviorism, behavioral science.
(30:32):
Is conflated with ABA thatyou have clearly described as
a system of coercive control.
Yes.
Is that correct?
There's no other, there's no other version
Jackie-Edry (30:47):
there are a lot of versions, but the question is, what's, what's
the point , first of all, it, it, it.
Takes away the person's identity andtrying to shape them and mend them
into something that they are not.
Behavior science is a huge thing.
I mean, there's, it has, uh, uh, ifyou're talking about the kind of therapies
done with an autistic child under this,any kind of behaviorist program, yes.
(31:10):
I have a definite aversion to that.
And I think it's all connected.
And it's sometimes remarketedbecause there was a lot of
backlash, but behavioral.
Science can be about anything andnot having anything to do with
that, but just the study of howpeople interact with each other.
But anything that is Skinner like Lovaslike or stems from that, I believe is the
(31:33):
initial premise of trying to teach, makepeople what they're not, and to teach
people to mask, which has a tremendous.
Negative effect on them in the longrun and causes burnout and causes
feeling of failure and causes lackof self-image, positive self-image.
And I can go on and onand on and on and on.
(31:54):
I, I do have a serious problem with that.
That's not to say that if a person,let's say, I'll just my sound for an
example, because it's, it's easy if hischallenges as, as being autistic are
getting in the way of his quality of life.
I'm not gonna say, okay, just do asit in the, sit in the corner all
(32:15):
day and do what you feel like doing.
But I, I won't go about it bythe way you're talking about it
rather meet him where he's at.
Communicated with him on things that areinteresting to him and gradually pull
him to me and to interact with me bybuilding trust and, and having fun and,
and playing and being, you know, naturalthe way a, a typical baby would go through
(32:39):
the different stages of development.
So I would start with getting allthose prerequisites into, , into
place , and building cognitive.
Building blocks and social building blocksand taking the time to do things slowly.
'cause I don't want him to be in asituation where he can't communicate his
needs and, and then he'll be frustrated.
(33:00):
But to sit down and, and, and, and saythe same word 50 times and memorize lists
and lists of words, that has nothingto do with communication as far as I'm
concerned, that has sitting in a room andlearning lots of words and flashcards.
But what does it haveto do with real life?
So I'll take him and walk down thestreet with him and point to every single
thing that I see on the street and talkabout it and its history and what it
(33:22):
looks like and what you can do with him.
And that's the way I'll teach him thosewords, but I'm not gonna teach him a bunch
of flashcards and they get a prize for it.
That doesn't make sense in reality.
I wouldn't do it to aa per se regular child.
If somebody would do that to me, Iwould probably get up and swat them.
So why would I do it to a child who has.
(33:43):
Challenge of any way or a disabilityof any way which, and he cannot make
his need or, or he cannot protestin the way that typical child would
protest if you're doing somethingto them that that is damaging.
That makes sense.
Jules-AutisticRadio.com (33:57):
It makes perfect sense to me.
So going back to the plasticityof the brain again, because it
has been put forward almost inthe Jesuit way, give me a child at
seven and I'll give you the man.
If you can train a child up until apoint, it will always be with them.
(34:18):
I think is one of the, uh,interpretations of that returning
to the plasticity of the brain.
You are not saying that people don'thave the opportunity and support.
To make changes, learn new skills,learn to be able to, I think what
(34:41):
you said was communicate theirneed, and so they need methods and
supports to be able to do that.
You're not saying that there isn't aa way to approach this, which means
that the plasticity and adaption ofthe brain can improve somebody's life.
(35:03):
You're not saying that.
But what you are saying is thateverything to do with the word
behaviorism is associated for youwith this coercive control, A, B,
A that we've seen demonstrated.
Again, again, stop the shock ban A, B,A and everything that looks as though it
(35:28):
comes from a stem of behavioral science.
In your mind is a repackaging in the a, b,A industry that uses children and adults
as fodder for an industry of moneymaking.
All of that, in a nutshell, that's notputting any words in your mouth, is it?
Jackie-Edry (35:50):
You know, it's real hard to categorize in me and I, I am sure
that there are exceptions and I am.
Perhaps some people that are usingsome of the ABA techniques, who knows?
Maybe, you know, I, I don't know.
But, but more or less, more or less,I guess it's become like an industry.
It's become an industry.
It's become a cult in a lot of ways.
And if you say anything or ask questionsabout it, then, then often people get
(36:12):
attacked or asking questions about it.
When I, in the beginning, uh, when I,when I went and, and I was writing and
I. I was told, don't say anything aboutABA 'cause you know, no one wanna buy
your book, you know, it will put me ona black list and, and stuff like that.
And I, I, I follow my truth.
I don't, I don't care whatanybody has to say really.
(36:33):
If it doesn't sit well with my conscious,then not, then I'm not gonna say
it or do it, you know what I mean?
So I, again, I don't feel that'shumanistic and, and, and I see the way
it's taught in schools, my daughter.
A number of years ago went to learnspecial education, and I saw what
they were teaching her and, and howthat she, part of her training was
(36:56):
learning about behaviorism and, and,and, and autism and, and the things
that I saw just made my hair stand up.
So even though they say it might bemore the new kinder form, I have yet
to see that I, I, I don't see thatperhaps it exists, but I have yet to
encounter it firsthand, and I don't seeit teaching the skills that people need.
(37:17):
To give them the qualityof life that they need.
Jules-AutisticRadio.com (37:20):
Thank you, Jackie, for dealing with this difficult
subject with me today on autistic radio.
I hope that you have felt that what Ihave done here is listened and given you
the opportunity to speak out your truth.
(37:42):
The listener will take in.
What they've heard and make theirown mind up from what they hear.
It's not up to us to directthem to what they think.
Jackie-Edry (37:59):
Yeah,
Jules-AutisticRadio.com: there's, I agree with that. (38:00):
undefined
There's quite a lot more thatI want to speak to you about.
'cause I'm only on the first, I'mnot even on page 30 of your book yet.
Jackie-Edry (38:13):
Mm-hmm.
Jules-AutisticRadio.com (38:15):
Is there a chance in the future that you
will return to us here on ArtisticRadio and talk a little bit more and
expand upon the rest of your book?
Jackie-Edry (38:26):
I have to say that it has been fascinating and a
pleasure to, uh, to speak with you.
Very, very interesting and, andI've enjoyed this conversation and
enjoyed speaking about difficulttopics because I think that.
It gives people the opportunityto, to learn and understand things
from different perspectives.
And then if we facilit that dialogue,then, then I think everybody benefits
(38:51):
from hearing all, all differentsides of things so that you're not
afraid to go down that road and askdifficult questions is, is fantastic.
And keeping with that, I'd loveto, to meet with you again and,
and get to know you better.
And speak further and, andtalk about whatever topics you
think are relevant for sure
(39:11):
Autistic radio is about us.
It's for us, and it's from us.
Autistic Radio is about you.
It's for you, and it can be from you.
We have every single Sunday dropin four, four 4:00 PM every Sunday.
(39:37):
That's not live.
That's us getting together,us talking community.
Every Sunday, Harry leads a fivefive 5:00 PM a discussion around
the Facebook page that he creates.
Involve yourself by suggestingwhat we should talk about next.
(40:00):
Share it with Harry and.
The bigger picture, advocate, use us.
Speak to the world, your project,your idea, your enthusiasm.
We have a whole range of differentprograms that will fit what you want.
(40:24):
As far as listening goes, there'ssome challenging stuff out there.
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals challenging
(40:45):
their ideas and bringing whatyou say in other spaces to them.
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
Autistic radio is very varied.
(41:06):
We need a favor to encourage us.
We need you to share us.
When you share us.
You give autistic people power.
When you share us, you makeus impossible to ignore.
When you repost on LinkedIn and Facebookand anywhere else, you are advocating
(41:33):
for everybody in the autistic community.
So pick the things that you arehappy with and get them out there.
So thank you, thank you, thankyou, thank you from all of us.
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