August 27, 2025 • 42 mins
Dannys-People-Memoir-Manifesto-Autism
Thank you,
Dr. Virginia Bovell and thank you,Dr. Colette Ryan.
I hope people will have a look at the book above after hearing the conversation.
Jules-AutisticRadio.com
"It's lovely when your guests come and do your job for you, describing what we're here for on autistic radio.
To bring together people who come from slightly different backgrounds, slightly different ways of thinking, but find similarity and community around the neurodiversity paradigm.
Please join us again, you guys come back, talk to us again, express your experiences here through Autistic Radio so that we can follow the stories more closely. Thank you again today.
Thank you, thank you, Dr. Virginia Bovell and thank you, Dr. Colette Ryan.
The big conversation we need to have in autism is the one about behaviourism.
Our project here is opening channels of communication.
LINK TO SERIES EPISODES
ABA PBS Autism - Listen on Spotify - Series ONE
Gina-Karlberg-PBS
"I just think it's a really good idea that you're taking this initiative to speak to different people and encourage dialogue and just makes it so much easier not to speak past each other."
Jules-AutisticRadio.com
" It hasn't turned out exactly how I expected. What I found is that there's a nice group of people who have found behaviorism to explain a lot of things."
The-Big-Autism-Conversation-ABA-PBS-Behaviour-Analysis UK-SBA
Jules Autistic Radio
"I want to change ABA. "
"I don't know how or what is the thing I want to change yet. I just know that I want to know enough about it so that I can, bring something to it.
So I can bring some piece of knowledge that I know from my childhood or from my adult life as an autistic person.
I want to change it somehow, even though I don't know what that change is yet."
"Is that going to happen? "
Andrew Swartfigure
"Well, the short answer is the opportunity is there for that discourse. Rather than dance around the houses, I'm going to say yes, but I just don't know how long it will take."
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(00:00):
ABA-PBS-Behaviourism-The-Big-Autism-Conversation-Ep15-Dr-Virginia-Bovell-Dr-Colette-Ryan
=== Jules-AutisticRadio.com: I think I would have to say
(00:20):
as an autistic person, I feelthat my autism possibly makes
me less likely to include myselfwithin a collective society.
I
Jules-AutisticRadio.com:
think there's two factors in that.
(00:42):
The, the autistic sensibility itself tendsto be individualistic and, centered on
self as its priority, as all children,but we are, I think, or I am, less likely
(01:07):
as I go out into wider society to, toput the balance of the importance of
the wider society and conformity to thebehaviors of the wider society in those
kind of everyday ways as importantlyas maybe the general population.
(01:29):
But I have to find ways of describingthat, that doesn't make it seem
as though autism is entirely selfcentered because I don't believe it is.
I think autistic people arevery sensitive to the wider
society and the big good as well.
It's just that the way society expressescollectiveness, Is uncomfortable for me.
(01:56):
Does that make some kind of sense?
Dr-Colette-Ryan-PhD (01:57):
It does, it does make sense.
And I'm going to add to that, you as anadult are now able to reflect on that.
For parents, particularly here in Japan,they take on the burden of the fitting in.
And so for parents, thefeeling is, is, is, I
Jules-AutisticRadio.com (02:21):
think I'd like to start our conversation
there, Colette, if that's okay.
We have yourself as an expert orsomebody who speaks very clearly about
floor time, and we're introducingto the conversation somebody who's
spoken to us before, Virginia.
Virginia is somebody who's had experiencepersonally with her own son in her own
(02:45):
family and also professionally buildingABA principles or behaviorist principles
into a school setting with, you know,different experiences of that over time.
I think the two of you together haveall kinds of shared experiences looking
(03:07):
at the way children are educated.
Colette, you're in Japan.
And you were describing tome a sense of community that
has a certain name in Japan.
Could you go through that again for me?
Dr-Colette-Ryan-PhD (03:24):
I've been here on and off for about two and a
half years as we build up a school,Neurodiversity School in Tokyo.
We have been.
gaining an understanding of andlearning to support in our parents
is a concept called meiwaku.
Meiwaku
(03:46):
is a very traditional Japanese concept,which supports families and trying
not to cause a difficulty for others.
So not to cause them bother, not tobe too noisy or cause a disturbance
on the trains or anything thatcan, can take away from another
(04:12):
person's experiencing of the world.
And now we have to pair that with theidea that children with neurodiversities
They don't really understand all thetime about societal rules and what the
social mores are within their culture.
(04:32):
And so for many of the parents here,it's difficult to, to go out to
dinner or to the park or to the mallbecause their child doesn't always.
Act the way that other childrendo, they stand out and they are
different and families are afraidto cause other people a bother.
(04:53):
We support our families and understanding.
Our bigger goal is to understand thepopulation and the communities that
these families live in and support, the community understanding what
individual differences are so thatfamilies can go anywhere that they
would like to go and feel comfortable.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Well, that's fascinating. (05:15):
undefined
It's seems to me like it'sa large scale version of the
challenge that we're facing.
We all face those of uswho, who are neurodivergent
or who have a neurodivergent familymember is degree of negotiation and
(05:37):
compromise can be not only achievable,but is sort of morally right.
We have the social model ofdisability that says, actually,
it's all about the environment andthe society that's oppressing an
individual who has differences.
(05:58):
, and it links to floor time.
I heard your podcast.
It's a framework morethan an intervention.
Floor time or ABA or any of the otherapproaches to enabling a young person
who's neurodivergent to, to thrive.
Is this compromise, to whatextent do we require them to fit
(06:20):
in with the environment and werequire the environment to adapt?
I think it's, it has to be a bit of both.
, like my son, it's not in his interestto be naked when he's outside because
it will make him feel vulnerable.
His choice is still to be naked.
, that's what he would prefer, an indoor,in his bathroom and his bedroom.
(06:44):
That's lovely.
When he's in the communal areawhere others come, he has learned
that he needs to get there.
That's just a very simple exampleof, I think, the challenge that
it sounds to me like you'redescribing in your work in Japan.
Dr-Colette-Ryan-PhD (07:02):
I think you actually, Virginia, really brought it to
a beautiful spot your son learned wherehe could be naked and where he couldn't.
That's the piece that we get to do asfloor timers to support an individual
to know the where's, to know the why's,to know the how's, as we support them
(07:25):
developmentally to understand theirenvironment and, and again, the rules,
the, the mores, the social requirementsto live within that environment.
Peacefully, and in, in a good relationshipwith their neighbors, their fellow
countrymen and community people.
Jules-AutisticRadio.com (07:46):
I think people, listening, coming from an autistic
angle, listening to, two adult parents.
For us as autistic individuals,how you approach that
fitting in is really the key.
The advocates who have spokenabout ABA in a negative fashion.
(08:12):
have described an enforcement of anorm that they're uncomfortable with.
I'm wondering to myself,
both floor time and behaviorist practices,inevitably going to be some kind of
(08:35):
restrictive training regime to justenable our children to be in society.
Dr-Colette-Ryan-PhD (08:42):
As a floor timer, I can say no to floor time,
we don't, we don't train anyonefor any skill or any behavior.
What we do is support development.
What I, what came to mind, Jules, asyou were talking was, A phrase that
(09:04):
we hear quite frequently when parentscome to pick up their children.
And that's the phrase, I'm sorry.
I'm sorry that my childdidn't eat their lunch.
I'm sorry that my child threwthe paint across the room.
I'm sorry that my child hit somebody.
I think if we can support the communityat large to understand that that's
(09:25):
development, we all do those thingsas we're going through development.
I think if we can support the widercommunity, then the fitting in piece will
be easier for our autistic individuals.
So that's where I think we cando some of our floor time work
is not with the individualthemselves, but with the community.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And if I could to develop that (09:49):
undefined
really, , my feeling is that a lot ofthe ability of the individual to develop
will vary according to individuals.
And I suppose that I have two concernsand one doesn't sound like I'm an
(10:13):
ABA person at all is that I havehad heard autistic self advocates
say we reject this idea that thereis a A standard developmental path.
Are you not perhaps imposing a normof development on us when we're not
going to develop in the same way buta second contrasting thing to say is
(10:38):
that contemporary behavior analystsin the UK, certainly, and I've had
these discussions actually feel thatwhat was wrong with early Lovas type
ABA was that they didn't take accountof an individual's own development.
development and their own readiness.
Dr-Colette-Ryan-PhD (10:54):
Yes, absolutely.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Contemporary ABA in the UK, certainly (10:58):
undefined
the best of it is all about the personwhere they're at and going with where
they're at and finding out what intereststhem and absolutely flowing with them.
Yes.
It still leaves us withthe question jus answered.
(11:19):
I think, and I I think it's beyond anyintervention, it's almost a sort of
question for all humans is we all in someway have to learn to base certain rules.
I mean, I thinking dri drivers, ifif drivers didn't pay driving rules,
there would be chaos on the roads.
Dr-Colette-Ryan-PhD (11:39):
Mm-Hmm,
. Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: There are others that we may really
reject them and not like them.
We all have to learn to fitin with one another because
we are all social creatures.
And I suppose it's, it's thatquestioning of when is it a
legitimate fitting in and when is itan imposed restrictive fitting in?
(12:04):
Yes.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And I absolutely accept , that didn't dawn (12:05):
undefined
on the early practitioners, but I thinkit is now, I agree it's incumbent on all
of us while we're working with individualsto also try and change the world around
us to make it more autism friendly,more neuro friendly and to become
campaigners if you like, or influencers.
(12:28):
I feel and hope that's beginningto happen as more and more people
seem to be aware of, of theexistence of neurodivergent people.
I totally agree we have to do both.
Dr-Colette-Ryan-PhD (12:38):
Yes.
, it's interesting that you describednew ABA as being child friendly,
meeting children where they are andsupporting them from where they are.
And that's, that's beenfloor time for 40 years now.
That's what we've been doing.
(12:59):
Not even calling in an intervention.
It's, it's more of a way of being withanother person that, that supports
their ability to develop in, inthe way that they want to develop.
I'm not going to impose my ideals on, on achild, but I am going to support them in,
(13:22):
and being able to get to where they want.
I'm going to support parents andtheir vision of parenting and,
support the communities again.
To be able to, to really understandtheir neurodivergent population , and
get more to, autism awareness day,that doesn't mean anything to us.
(13:46):
To be aware, accept andunderstand more than just one
day a year or one month a year.
It's gotta be much bigger, amuch bigger process than that.
Jules-AutisticRadio.com (13:56):
It sounds to me as though you're.
Almost giving permission to the autisticcommunity now that they are no longer
children in 80s and they are adults now in
2024 to start framing thingsfor themselves rather than
(14:19):
have their parents frame things
.Is that a generational change that's happened perhaps?
In our text is Raymond I put downsupport development sounds very
much like insist on behaviors.
You see, it just sounds as thoughthe words have been slightly
(14:40):
changed for the same concept to me.
So I want to check on that with you.
Raymond then texted, almostlike one word replacing another.
Perhaps the collective is nota thing, but an experience.
A fluid experience.
And he accepts that culture might beanother matter around that, but he wants
(15:05):
to put forward the idea of there beingfluid structures, and I'm wondering how,
how we fit if the structure is fluid.
Dr-Colette-Ryan-PhD (15:13):
I, I think all, we are all fluid.
If I'm in one environment, I, Imight show my development in one way,
but I'm in a different environment.
I mean, I moved from upstate NewYork in the Adirondack Mountains.
(15:34):
to the middle of Tokyo.
So I'm, I think I'm been quite fluid inmy experiences lately, , you know, we talk
about floor time as not being somethingthat we do, but it's a way of being.
That's an important piece to think of.
(15:54):
When we want to go to the spot wherewe're insisting on behaviors, that's
not what we do as floor timers.
Because if I'm just going to bewith someone, they're going to show
me what they are interested in.
It could be just the two of ussitting there, or it could be the
two of us doing something together.
(16:15):
But it's, it's not so much somethingthat we do, it's more that we're a
way of being with another person.
Jules-AutisticRadio.com (16:23):
I don't think maybe I was clear.
Because I'm not seeing the link betweenwhat you're saying and the concept we're
trying to, to talk about over in the text.
Ray has commented on my texting.
I said support developmentsounds very much like.
Insist on behaviors and Ray respondswith almost like one word in the sentence
(16:49):
is replacing another puts forward theidea that perhaps the collective is
not a thing, a fixed idea of society,but a fluid experience, which means
that the thing that we're trying toconform to is constantly changing.
And
(17:12):
perhaps we have to have somemindfulness about the fluidity
of individuals within that.
And I noticed you talked about your ownexperience as an adult, which is very
different from an early, an early child,because you have much more autonomy.
Absolutely.
(17:34):
But our, our
Dr-Colette-Ryan-PhD (17:35):
little ones, our, our younger children, we
want to support them to get to thepoint where they have the autonomy.
And if they don't have enoughexperience as of autonomy.
Like making their own decisions,deciding what they want to play with,
what, what activities that they wantto do, what books they want to read.
(17:58):
Where is that practicegoing to come from as far as
learning to be autonomous?
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Can we come, come in here (18:06):
undefined
with a couple of reflections?
And I think what's crucial here is
the age of the peoplewe're trying to help.
And also, in my case, my son's, what theycalled global developmental delay, which
(18:32):
some people call intellectual disability,others called learning disability.
And
there
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: was a sense that without (18:41):
undefined
building, And I would call it anintervention because it felt like
drawing his attention to the wider world.
I think that's what I would call it.
It's enabling him, encouraging him tosuddenly realize through relationship.
(19:02):
, this is absolutely where youand I are as one on this.
Danny had to.
Young ABA tutors who came intoour home and gave him a lovely
time, an absolutely lovely time.
And they built relationship.
(19:23):
And for me as his mum, and I'vewritten about this in my book, it
was like he was suddenly thinking,Ah, so this is what it's all about.
Yes.
He was very much attached to his mumand his dad and wanted lots of cuddles.
But we didn't have the understandingand we had gone through a sort of
(19:46):
speech therapy led intervention thatwas, it sounds quite similar to the
following his lead a lot, but heseems still utterly uninterested.
It's like mom and dad.
That's not what you're there for.
You're that you're not there for this.
Where's my child.
And suddenly the relationshipreally meant something.
(20:09):
So he was motivated to respond, butbecause of his learning disability, I
think we, we weren't sure that he wouldorganically acquire some learning.
In enough areas that wouldn'thold him back long term.
And he's still profoundlylearning disabled.
He's glorious and he's lovely.
(20:32):
For us, that intervention helpedsort of speed up his awareness
of how to learn or how to
be taught.
And it was a far cry from wantinghim to be distinguished over his
peers or just do rote learning.
But I think what we share is this
belief that relationship is key.
(20:54):
Absolutely.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: But I think different individuals. (20:55):
undefined
Might be motivated in different waysbased on maybe the relationship they have
with the, with the person they're with.
Does
Dr-Colette-Ryan-PhD (21:06):
that make
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: any sense at all? (21:08):
undefined
It
Dr-Colette-Ryan-PhD (21:09):
absolutely does.
And, and I'm also thinking aboutthe, the individual's understanding
of what a relationship is.
Relationships for learning.
We know that all learning happensin the context of a relationship.
So, the relationship for learning,it needs to be in a relationship that
(21:29):
the individual feels good with, feelscomfortable with, feels safe with.
It sounds like your two therapists,they took the time to develop a
relationship for learning and thatdoesn't always happen that, that a
therapist or an educator will takethat time to develop the, I call
(21:53):
them the ooey gooey relationships.
The ones where we have this reallygreat shared experience together.
We're both having a good time and that'sthe relationships you want to go back to.
Okay.
Cool.
Those are the relationships where learninghappens just cause and not because
someone told you that it needed to happen.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Yep. (22:13):
undefined
I, I completely agree with that.
I mean, one thing I've learned isthat almost whatever you do with
someone, if the relationship is good,then other things will unfold well.
Yes, absolutely.
(22:33):
And I think that's maybe.
Where the sort of almost warfare betweendifferent so called approaches needs
to become a bit more sort of treatyorientated, or we need to make things
that I think what we all have in common,because we have a reset, there's another
thing, RDI, Relationship DevelopmentIntervention, registered roadmark.
(22:57):
In the UK, we've had PACT, the PreschoolAutism Communication Trailer, and I
think I would almost bet money thatif a study could somehow look at the
quality of the relationship rather thanthe method, you might find a common
denominator for what a positive outcome,whatever a positive outcome actually is.
(23:21):
And it's certainly not being lessautistic, but I suspect the relationship
is probably the key thing and it's,and it links to the motivation.
Absolutely.
If I look at what Raymond's saying,because this is all so interesting.
Are there spaces in mainstreamculture for those who develop
in their own non normative ways?
Oh, let's hope so.
(23:41):
Let's hope
so.
Process as opposed to arelationship as a norm of behavior.
Yes.
I mean, process sounds fluidto me, if that's the fluid that
Raymond was referring to before.
Dr-Colette-Ryan-PhD (23:55):
Okay.
Absolutely.
And it's, and it is more of a processwhen it's, when it's skill based learning,
we, we teach that skill without theunderstanding of how did we learn that?
And I think if we go to the process,I think it's much easier to learn, but
(24:17):
I want to go back to the culture piecethat Raymond mentioned, which I think
is a huge piece of what the autisticcommunity deals with on a daily basis.
What's acceptable in some culturesis different than in other cultures
and different third cultures.
I'm so I really, I'm reallythinking about how can we support.
(24:43):
How can I support the autisticcommunity here in Japan when fandom
is a great thing, when you have areally nice focused interest, typically
as on anime or manga, that's great.
Let's, let's focus on that interestwhere in other cultures, those, those
(25:04):
focused interests are not as valued.
How can we support our autisticcommunity if we're not willing to
enjoy what somebody else enjoys?
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: I wonder if gradual familiarity, gradual, (25:18):
undefined
, gradual visibility slow, gently, gentlyway of, of enabling a fluid culture to
adapt to neurodivergence and vice versa.
My son, was little.
I used to take him to a local cafe.
(25:39):
And as he got older and hisphysical health problems became
really quite severe, and he wouldoccasionally suddenly scream and hit
himself or try and hit me in pain.
It wasn't classic autisticbehavior as some of the doctors
tried to far me off with.
(25:59):
But because Danny had been in that cafefor many years, the other customers,
some of them And at one point whenhe screamed and tried to hit me.
I, I just said to the assembledcustomers, I'm so sorry.
And one of the customers said, youmust never apologize for your child.
She said, Danny can do no wrong.
Dr-Colette-Ryan-PhD (26:21):
Oh, I love that.
Thank that customer for me.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And I never done any autism (26:26):
undefined
awareness training on her.
I'd never told her about thesocial model of disability.
She had just got to.
Be familiar with Danny.
Again, to understand that he wasdifferent and that he had needs,
but that she was fond of him.
And I think that was an organic wayof working with a child, but also
(26:53):
working with a wider environment.
And as far as possible, thefamilies you're working with,
they're May Kwa You, is it?
May Kwa Ku, that's it.
May
Kwa
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Ku. (27:04):
undefined
You know, what I would suggest to them,and this is about going into the wider
world, is being brave and, and justthinking, we'll just do this bit by bit.
We'll do it very, very slowly.
But we will hope that other peoplewill gradually come to see that we're
not threatening them.
But
(27:26):
if we can't, we can't.
It's really hard.
The word that you used, brave, haveyou used that for yourself lately?
No, but I
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: think I look back and I was (27:38):
undefined
aware that I had to be, I hadto undo my own conditioning.
My, my parents said,you never make a scene.
You must never draw attention to yourself.
And of course, being out with Danny, wewere permanently drawing attention to us.
And I just thought, I loveDanny so much and he's fine.
(27:59):
And And I must undo my conditioning.
And that was brave.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Thank you. (28:05):
undefined
Not half as brave asDanny's been in his life.
But we just have to sometimestake a leap of faith.
But I think we shouldn't blamepeople for being frightened.
That's parents.
But also parents need to remember thatwhat we, our children go through will
(28:26):
require more courage than we've got.
And we have to respect them.
Jules-AutisticRadio.com (28:28):
I want to take us back to something
I've written in the text.
And it's about the relationship betweenthe value of the practitioner as a person.
Their whole rounded self withall of their skills that they
bring to it, not just their owntraining and the training itself.
(28:53):
It seems to me that both of you aredescribing the importance of the
personal way above the doctrine ofthe therapy or the support behind
Maurice-ELAS-Autistic-Group (29:06):
it.
Absolutely.
We're both shaking our head, Virginia.
In radio,
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: it's better if you speak. (29:19):
undefined
Turning
Jules-AutisticRadio.com (29:22):
your cameras off will stop you communicating secretly
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: with each (29:27):
undefined
Jules-AutisticRadio.com (29:31):
other.
It goes back to this thing
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: of believing in the (29:33):
undefined
individual, doesn't it?
And I've known ABA therapists who seemedfairly impersonal and they made absolutely
no progress getting through to Danny.
They were old school and I've knownABA therapists who clearly really enjoy
(29:53):
being with him and almost instinctivelylight him up so that he actually wants
to be with them and they with him.
Person centered is, is the phrasethat is used a lot in the UK,
both in adult and in child care.
I feel that that has to bethe core of everything really.
(30:15):
If that echoes what youwere suggesting, Jules.
Dr-Colette-Ryan-PhD (30:18):
If I could add one word to that, I would,
I would add family center
because an individual is part of a family.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And Would you then go along if (30:29):
undefined
different families within theirdifferent cultures find some things more
tolerable or intolerable than others?
Is there a need for the sake of thechild's relationship with their family
to guide the child to make certainadaptations in one family that you
(30:55):
wouldn't guide a child in another family?
Similar adaptations.
Totally.
Yes.
Maurice-ELAS-Autistic-Group (31:04):
No, if a child disagrees, I mean, that , can't
get anything worse than being a child.
Seeing another child allowed somethingthat you're not getting and then anything
more of a cause to behave in a way thattries to force that to be dealt with.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Yeah. (31:20):
undefined
That's the crux and it's
a sense of justice or injustice aswell, but it lies at the heart of that.
And, and that, is that why we haveto decide what priorities we have?
Yeah.
(31:40):
In terms of family and individual voice.
Maurice-ELAS-Autistic-Group (31:46):
So condition knowledge and the science of things
like sensitivities can, could of itselfdefine things that are priorities
because their immediate well being.
The one that's the biggie for me,clothes choices and freedom in those,
(32:12):
and you could have either, you couldhave either conservative families or,
The, the school institution that wantsto fit everyone into the same box and
that both of those are going to collidewith, but behavioral outcome to be
oppressed to the realisttowards the status quo and adapt
to it is colliding with the
(32:34):
comfort that can very physically hurt.
So it's not surprising that's
led to old school failures.
To flow with the individual,
Dr-Colette-Ryan-PhD (32:42):
I love Maurice that you brought up the idea of clothing, I
think that's one of the more personalthings that we get to do for ourselves.
That we can pick out our own clothingis something that, as we become a big
kid, we're allowed that privilege.
I love that you brought up the ideaof the conforming to the clothing
(33:07):
that is A requirement and how we cansupport individuals to develop that
sense of agency maybe by adaptingor developing processes where we can
understand when someone can't wear theblazer or the tie or the, the black
(33:28):
shoes that are required by a school.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: , I was billed by Jules as someone (33:32):
undefined
who's involved in settingup a school that used ABA.
There was no schooluniform, quite deliberately.
, and with, with Danny, he will choose hisclothes and he will often, As I, as a , a
(33:52):
neurotypical looker will say they'reback to front and inside out, and he's
put them on and that's fine indoors.
But this is where I think thissort of ethical questions.
If he went out into communitywearing inside out, back to front
clothes, would he be vulnerable toridicule, stigmatizing, et cetera?
(34:17):
That I can protect him from by justgently encouraging him to reverse them
and put them on in the way that mostof the rest of us would wear them.
I think any parent and any sensibleadult, be they a ABA therapist or not.
Would learn, would attune to thefact that he is sensitive he's got a
(34:40):
hoodie that he never wants to wear.
Because it's sensorily unpleasant forhim, so we don't make him wear it.
I think a lot of us canpick up on those things.
If parents or people around themaren't noticing that this might
be a sensory issue, then theythemselves need a bit of training.
Dr-Colette-Ryan-PhD (35:00):
Absolutely.
Part of the work that we need to do here
no one talks in college about whatyour proprioceptive or your vestibular
sense are, or how you can have ahigh arousal or a lower arousal.
So bringing that piece ofinformation to Japan is as a gift
(35:22):
that I'm very excited to be able
To be giving great
Jules-AutisticRadio.com (35:27):
I'm wrapped in the conversation, hearing you guys agree
with each other, describe similaritiesand processes that make sense, and also
chime with the neurodiversity paradigmthat we're dealing with at the moment.
Before we say goodbye toyou, there's two projects.
(35:50):
That I want you to showcase.
. Virginia, please talk to usabout the book that you've just
published, and then Collette.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Thank you very much for (35:57):
undefined
the plug.
It's called Danny's People, amemoir and manifesto about autism.
The journey that he and I havebeen on he's now a 31 year old.
It includes two chapters about ABA.
One saying ABA, the good news questionmark, and The ABA, The Controversy, and
(36:23):
I say about it that it's, ABA weavesits way through our story like a snake
with the dual potential from the ancientsymbolic myths for harm and thriving.
I've been on a journey about ABA throughDanny, but Then the school we set
(36:44):
up, but also through all the amazingpeople we've met, including autistic
people who have been critical, and Ifeel there's still a journey to be had.
And my, my plea is to go on havingthese sorts of discussions really.
And.
(37:05):
What worries me about the dispute isthat we end up talking about what are
possibly nuances in the wider world whenautistic people are being abused, sent
into awful institutions, being surrounded,you know, like four to one restrained by
(37:29):
people who know nothing about autism and
who If you don't know the first thingabout things like sensory sensitivities
and building relationships, whatworries me is that if we're too busy
carving out our own little niche,intervention versus intervention, these
wider, massive social deficiencies andlack of funding, certainly in the UK,
(37:53):
we're not doing service to the biggerpicture, to the bigger prevailing needs.
My book just isn't just about JPA,it's, it's about the struggles we've
been through because doctors didn'tbelieve that Danny was unwell, about
some amazing supporters, people we'vemet who've become friends, and Danny has
(38:19):
the last word, although he's non verbal.
Dr-Colette-Ryan-PhD:
. I, I love that you talked about the book as being a journey,
because as a floor timer, that'swhat we, we always talk about is.
It's the journey that we're onto gain that understanding , of
neurodiversity of the autisticcommunity and what their needs are.
(38:44):
I've taken my, my show on the road, asthey say, we have developed a school that
is a floor time based school with a littletiny bit of Reggio Amelia put in to it.
Our school is called theNeurodiversity School in Tokyo.
(39:04):
. We started in September with 10 children.
. And hopefully get to 15 students in ourbeautiful building that has a music room
and a sensory room and an art room anda library area and space, so much space
for play and interaction and experiences.
(39:27):
Our children are between threeand 12 years old, and every one
of them is absolutely wonderful.
And I appreciate the opportunity thatAutistic Radio has just given me to be
able to talk about our wonderful schoolthat I've been involved with for about
two and a half years, and we have finallyseen it come to life in September.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: That's so fantastic. (39:53):
undefined
So we've both got experience ofsetting up a school in a unfamiliar
environment where people might not knowtoo much about what we're trying to do.
And I would echo, absolutely.
It's great that autistic radiogiven us this opportunity.
And I, what I love is, is theopportunity to have these conversations
(40:17):
in a safe, respectful way, whichis more important than anything.
I mean, we're all learningall the time, aren't we?
And we need all listening andneurotypicals tend not to listen
enough to autistic voices.
And I'm very grateful that AutisticRadio are actually listening to
neurotypical voices, like you
(40:40):
said, and there's far more giving andgenerosity from the autistic population
than many neurotypicals realize.
That's a really bad thing.
Dr-Colette-Ryan-PhD (40:49):
And I love the opportunity to talk about
neurodiversity and, and hopefullysupporting others and gaining an
understanding of what neurodiversity is.
Jules-AutisticRadio.com (41:00):
It's lovely when your guests come and do your job for you,
describing what we're here for on artisticradio to bring together people who come
from slightly different backgrounds,slightly different ways of thinking,
but find similarity and communityaround the neurodiversity paradigm.
(41:26):
A voice that gets.
Put out there into the ether forother people to be influenced by.
Please join us again, you guys come back,talk to us again, express your experiences
here through Autistic Radio so that wecan follow the stories more closely.
Thank you again today.
(41:47):
Thank you, thank you, Dr.
Virginia Bovell and thank you, Dr.
Colette Ryan.
Thank you.
Arigato gozaimasu.
Would you like to say that in Japanese again for me?
Dr-Colette-Ryan-PhD (41:59):
I sure will.
Arigato gozaimasu.
Jules-AutisticRadio.com (42:03):
Arigato.
That's the only Japanese I know.
Autistic radio is personal and it'sinformal, which means that those
taking part speak only for themselves.
(42:24):
If they mention an organizationthat they work for or they're a
member of, they're not speakingon behalf of that organization.
We shouldn't take anyimplication from that.
It's also the case that people'sopinions change over time.
So while this recording Is there forever?
(42:47):
People change.
ABA-PBS-Behaviourism-The-Big-Autism-Conversation-Ep15-Dr-Virginia-Bovell-Dr-Colette-Ryan
=== Jules-AutisticRadio.com: I think I would have to say
(00:20):
as an autistic person, I feelthat my autism possibly makes
me less likely to include myselfwithin a collective society.
I
Jules-AutisticRadio.com:
think there's two factors in that.
(00:42):
The, the autistic sensibility itself tendsto be individualistic and, centered on
self as its priority, as all children,but we are, I think, or I am, less likely
(01:07):
as I go out into wider society to, toput the balance of the importance of
the wider society and conformity to thebehaviors of the wider society in those
kind of everyday ways as importantlyas maybe the general population.
(01:29):
But I have to find ways of describingthat, that doesn't make it seem
as though autism is entirely selfcentered because I don't believe it is.
I think autistic people arevery sensitive to the wider
society and the big good as well.
It's just that the way society expressescollectiveness, Is uncomfortable for me.
(01:56):
Does that make some kind of sense?
Dr-Colette-Ryan-PhD (01:57):
It does, it does make sense.
And I'm going to add to that, you as anadult are now able to reflect on that.
For parents, particularly here in Japan,they take on the burden of the fitting in.
And so for parents, thefeeling is, is, is, I
Jules-AutisticRadio.com (02:21):
think I'd like to start our conversation
there, Colette, if that's okay.
We have yourself as an expert orsomebody who speaks very clearly about
floor time, and we're introducingto the conversation somebody who's
spoken to us before, Virginia.
Virginia is somebody who's had experiencepersonally with her own son in her own
(02:45):
family and also professionally buildingABA principles or behaviorist principles
into a school setting with, you know,different experiences of that over time.
I think the two of you together haveall kinds of shared experiences looking
(03:07):
at the way children are educated.
Colette, you're in Japan.
And you were describing tome a sense of community that
has a certain name in Japan.
Could you go through that again for me?
Dr-Colette-Ryan-PhD (03:24):
I've been here on and off for about two and a
half years as we build up a school,Neurodiversity School in Tokyo.
We have been.
gaining an understanding of andlearning to support in our parents
is a concept called meiwaku.
Meiwaku
(03:46):
is a very traditional Japanese concept,which supports families and trying
not to cause a difficulty for others.
So not to cause them bother, not tobe too noisy or cause a disturbance
on the trains or anything thatcan, can take away from another
(04:12):
person's experiencing of the world.
And now we have to pair that with theidea that children with neurodiversities
They don't really understand all thetime about societal rules and what the
social mores are within their culture.
(04:32):
And so for many of the parents here,it's difficult to, to go out to
dinner or to the park or to the mallbecause their child doesn't always.
Act the way that other childrendo, they stand out and they are
different and families are afraidto cause other people a bother.
(04:53):
We support our families and understanding.
Our bigger goal is to understand thepopulation and the communities that
these families live in and support, the community understanding what
individual differences are so thatfamilies can go anywhere that they
would like to go and feel comfortable.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Well, that's fascinating. (05:15):
undefined
It's seems to me like it'sa large scale version of the
challenge that we're facing.
We all face those of uswho, who are neurodivergent
or who have a neurodivergent familymember is degree of negotiation and
(05:37):
compromise can be not only achievable,but is sort of morally right.
We have the social model ofdisability that says, actually,
it's all about the environment andthe society that's oppressing an
individual who has differences.
(05:58):
, and it links to floor time.
I heard your podcast.
It's a framework morethan an intervention.
Floor time or ABA or any of the otherapproaches to enabling a young person
who's neurodivergent to, to thrive.
Is this compromise, to whatextent do we require them to fit
(06:20):
in with the environment and werequire the environment to adapt?
I think it's, it has to be a bit of both.
, like my son, it's not in his interestto be naked when he's outside because
it will make him feel vulnerable.
His choice is still to be naked.
, that's what he would prefer, an indoor,in his bathroom and his bedroom.
(06:44):
That's lovely.
When he's in the communal areawhere others come, he has learned
that he needs to get there.
That's just a very simple exampleof, I think, the challenge that
it sounds to me like you'redescribing in your work in Japan.
Dr-Colette-Ryan-PhD (07:02):
I think you actually, Virginia, really brought it to
a beautiful spot your son learned wherehe could be naked and where he couldn't.
That's the piece that we get to do asfloor timers to support an individual
to know the where's, to know the why's,to know the how's, as we support them
(07:25):
developmentally to understand theirenvironment and, and again, the rules,
the, the mores, the social requirementsto live within that environment.
Peacefully, and in, in a good relationshipwith their neighbors, their fellow
countrymen and community people.
Jules-AutisticRadio.com (07:46):
I think people, listening, coming from an autistic
angle, listening to, two adult parents.
For us as autistic individuals,how you approach that
fitting in is really the key.
The advocates who have spokenabout ABA in a negative fashion.
(08:12):
have described an enforcement of anorm that they're uncomfortable with.
I'm wondering to myself,
both floor time and behaviorist practices,inevitably going to be some kind of
(08:35):
restrictive training regime to justenable our children to be in society.
Dr-Colette-Ryan-PhD (08:42):
As a floor timer, I can say no to floor time,
we don't, we don't train anyonefor any skill or any behavior.
What we do is support development.
What I, what came to mind, Jules, asyou were talking was, A phrase that
(09:04):
we hear quite frequently when parentscome to pick up their children.
And that's the phrase, I'm sorry.
I'm sorry that my childdidn't eat their lunch.
I'm sorry that my child threwthe paint across the room.
I'm sorry that my child hit somebody.
I think if we can support the communityat large to understand that that's
(09:25):
development, we all do those thingsas we're going through development.
I think if we can support the widercommunity, then the fitting in piece will
be easier for our autistic individuals.
So that's where I think we cando some of our floor time work
is not with the individualthemselves, but with the community.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And if I could to develop that (09:49):
undefined
really, , my feeling is that a lot ofthe ability of the individual to develop
will vary according to individuals.
And I suppose that I have two concernsand one doesn't sound like I'm an
(10:13):
ABA person at all is that I havehad heard autistic self advocates
say we reject this idea that thereis a A standard developmental path.
Are you not perhaps imposing a normof development on us when we're not
going to develop in the same way buta second contrasting thing to say is
(10:38):
that contemporary behavior analystsin the UK, certainly, and I've had
these discussions actually feel thatwhat was wrong with early Lovas type
ABA was that they didn't take accountof an individual's own development.
development and their own readiness.
Dr-Colette-Ryan-PhD (10:54):
Yes, absolutely.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Contemporary ABA in the UK, certainly (10:58):
undefined
the best of it is all about the personwhere they're at and going with where
they're at and finding out what intereststhem and absolutely flowing with them.
Yes.
It still leaves us withthe question jus answered.
(11:19):
I think, and I I think it's beyond anyintervention, it's almost a sort of
question for all humans is we all in someway have to learn to base certain rules.
I mean, I thinking dri drivers, ifif drivers didn't pay driving rules,
there would be chaos on the roads.
Dr-Colette-Ryan-PhD (11:39):
Mm-Hmm,
. Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: There are others that we may really
reject them and not like them.
We all have to learn to fitin with one another because
we are all social creatures.
And I suppose it's, it's thatquestioning of when is it a
legitimate fitting in and when is itan imposed restrictive fitting in?
(12:04):
Yes.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And I absolutely accept , that didn't dawn (12:05):
undefined
on the early practitioners, but I thinkit is now, I agree it's incumbent on all
of us while we're working with individualsto also try and change the world around
us to make it more autism friendly,more neuro friendly and to become
campaigners if you like, or influencers.
(12:28):
I feel and hope that's beginningto happen as more and more people
seem to be aware of, of theexistence of neurodivergent people.
I totally agree we have to do both.
Dr-Colette-Ryan-PhD (12:38):
Yes.
, it's interesting that you describednew ABA as being child friendly,
meeting children where they are andsupporting them from where they are.
And that's, that's beenfloor time for 40 years now.
That's what we've been doing.
(12:59):
Not even calling in an intervention.
It's, it's more of a way of being withanother person that, that supports
their ability to develop in, inthe way that they want to develop.
I'm not going to impose my ideals on, on achild, but I am going to support them in,
(13:22):
and being able to get to where they want.
I'm going to support parents andtheir vision of parenting and,
support the communities again.
To be able to, to really understandtheir neurodivergent population , and
get more to, autism awareness day,that doesn't mean anything to us.
(13:46):
To be aware, accept andunderstand more than just one
day a year or one month a year.
It's gotta be much bigger, amuch bigger process than that.
Jules-AutisticRadio.com (13:56):
It sounds to me as though you're.
Almost giving permission to the autisticcommunity now that they are no longer
children in 80s and they are adults now in
2024 to start framing thingsfor themselves rather than
(14:19):
have their parents frame things
.Is that a generational change that's happened perhaps?
In our text is Raymond I put downsupport development sounds very
much like insist on behaviors.
You see, it just sounds as thoughthe words have been slightly
(14:40):
changed for the same concept to me.
So I want to check on that with you.
Raymond then texted, almostlike one word replacing another.
Perhaps the collective is nota thing, but an experience.
A fluid experience.
And he accepts that culture might beanother matter around that, but he wants
(15:05):
to put forward the idea of there beingfluid structures, and I'm wondering how,
how we fit if the structure is fluid.
Dr-Colette-Ryan-PhD (15:13):
I, I think all, we are all fluid.
If I'm in one environment, I, Imight show my development in one way,
but I'm in a different environment.
I mean, I moved from upstate NewYork in the Adirondack Mountains.
(15:34):
to the middle of Tokyo.
So I'm, I think I'm been quite fluid inmy experiences lately, , you know, we talk
about floor time as not being somethingthat we do, but it's a way of being.
That's an important piece to think of.
(15:54):
When we want to go to the spot wherewe're insisting on behaviors, that's
not what we do as floor timers.
Because if I'm just going to bewith someone, they're going to show
me what they are interested in.
It could be just the two of ussitting there, or it could be the
two of us doing something together.
(16:15):
But it's, it's not so much somethingthat we do, it's more that we're a
way of being with another person.
Jules-AutisticRadio.com (16:23):
I don't think maybe I was clear.
Because I'm not seeing the link betweenwhat you're saying and the concept we're
trying to, to talk about over in the text.
Ray has commented on my texting.
I said support developmentsounds very much like.
Insist on behaviors and Ray respondswith almost like one word in the sentence
(16:49):
is replacing another puts forward theidea that perhaps the collective is
not a thing, a fixed idea of society,but a fluid experience, which means
that the thing that we're trying toconform to is constantly changing.
And
(17:12):
perhaps we have to have somemindfulness about the fluidity
of individuals within that.
And I noticed you talked about your ownexperience as an adult, which is very
different from an early, an early child,because you have much more autonomy.
Absolutely.
(17:34):
But our, our
Dr-Colette-Ryan-PhD (17:35):
little ones, our, our younger children, we
want to support them to get to thepoint where they have the autonomy.
And if they don't have enoughexperience as of autonomy.
Like making their own decisions,deciding what they want to play with,
what, what activities that they wantto do, what books they want to read.
(17:58):
Where is that practicegoing to come from as far as
learning to be autonomous?
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Can we come, come in here (18:06):
undefined
with a couple of reflections?
And I think what's crucial here is
the age of the peoplewe're trying to help.
And also, in my case, my son's, what theycalled global developmental delay, which
(18:32):
some people call intellectual disability,others called learning disability.
And
there
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: was a sense that without (18:41):
undefined
building, And I would call it anintervention because it felt like
drawing his attention to the wider world.
I think that's what I would call it.
It's enabling him, encouraging him tosuddenly realize through relationship.
(19:02):
, this is absolutely where youand I are as one on this.
Danny had to.
Young ABA tutors who came intoour home and gave him a lovely
time, an absolutely lovely time.
And they built relationship.
(19:23):
And for me as his mum, and I'vewritten about this in my book, it
was like he was suddenly thinking,Ah, so this is what it's all about.
Yes.
He was very much attached to his mumand his dad and wanted lots of cuddles.
But we didn't have the understandingand we had gone through a sort of
(19:46):
speech therapy led intervention thatwas, it sounds quite similar to the
following his lead a lot, but heseems still utterly uninterested.
It's like mom and dad.
That's not what you're there for.
You're that you're not there for this.
Where's my child.
And suddenly the relationshipreally meant something.
(20:09):
So he was motivated to respond, butbecause of his learning disability, I
think we, we weren't sure that he wouldorganically acquire some learning.
In enough areas that wouldn'thold him back long term.
And he's still profoundlylearning disabled.
He's glorious and he's lovely.
(20:32):
For us, that intervention helpedsort of speed up his awareness
of how to learn or how to
be taught.
And it was a far cry from wantinghim to be distinguished over his
peers or just do rote learning.
But I think what we share is this
belief that relationship is key.
(20:54):
Absolutely.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: But I think different individuals. (20:55):
undefined
Might be motivated in different waysbased on maybe the relationship they have
with the, with the person they're with.
Does
Dr-Colette-Ryan-PhD (21:06):
that make
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: any sense at all? (21:08):
undefined
It
Dr-Colette-Ryan-PhD (21:09):
absolutely does.
And, and I'm also thinking aboutthe, the individual's understanding
of what a relationship is.
Relationships for learning.
We know that all learning happensin the context of a relationship.
So, the relationship for learning,it needs to be in a relationship that
(21:29):
the individual feels good with, feelscomfortable with, feels safe with.
It sounds like your two therapists,they took the time to develop a
relationship for learning and thatdoesn't always happen that, that a
therapist or an educator will takethat time to develop the, I call
(21:53):
them the ooey gooey relationships.
The ones where we have this reallygreat shared experience together.
We're both having a good time and that'sthe relationships you want to go back to.
Okay.
Cool.
Those are the relationships where learninghappens just cause and not because
someone told you that it needed to happen.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Yep. (22:13):
undefined
I, I completely agree with that.
I mean, one thing I've learned isthat almost whatever you do with
someone, if the relationship is good,then other things will unfold well.
Yes, absolutely.
(22:33):
And I think that's maybe.
Where the sort of almost warfare betweendifferent so called approaches needs
to become a bit more sort of treatyorientated, or we need to make things
that I think what we all have in common,because we have a reset, there's another
thing, RDI, Relationship DevelopmentIntervention, registered roadmark.
(22:57):
In the UK, we've had PACT, the PreschoolAutism Communication Trailer, and I
think I would almost bet money thatif a study could somehow look at the
quality of the relationship rather thanthe method, you might find a common
denominator for what a positive outcome,whatever a positive outcome actually is.
(23:21):
And it's certainly not being lessautistic, but I suspect the relationship
is probably the key thing and it's,and it links to the motivation.
Absolutely.
If I look at what Raymond's saying,because this is all so interesting.
Are there spaces in mainstreamculture for those who develop
in their own non normative ways?
Oh, let's hope so.
(23:41):
Let's hope
so.
Process as opposed to arelationship as a norm of behavior.
Yes.
I mean, process sounds fluidto me, if that's the fluid that
Raymond was referring to before.
Dr-Colette-Ryan-PhD (23:55):
Okay.
Absolutely.
And it's, and it is more of a processwhen it's, when it's skill based learning,
we, we teach that skill without theunderstanding of how did we learn that?
And I think if we go to the process,I think it's much easier to learn, but
(24:17):
I want to go back to the culture piecethat Raymond mentioned, which I think
is a huge piece of what the autisticcommunity deals with on a daily basis.
What's acceptable in some culturesis different than in other cultures
and different third cultures.
I'm so I really, I'm reallythinking about how can we support.
(24:43):
How can I support the autisticcommunity here in Japan when fandom
is a great thing, when you have areally nice focused interest, typically
as on anime or manga, that's great.
Let's, let's focus on that interestwhere in other cultures, those, those
(25:04):
focused interests are not as valued.
How can we support our autisticcommunity if we're not willing to
enjoy what somebody else enjoys?
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: I wonder if gradual familiarity, gradual, (25:18):
undefined
, gradual visibility slow, gently, gentlyway of, of enabling a fluid culture to
adapt to neurodivergence and vice versa.
My son, was little.
I used to take him to a local cafe.
(25:39):
And as he got older and hisphysical health problems became
really quite severe, and he wouldoccasionally suddenly scream and hit
himself or try and hit me in pain.
It wasn't classic autisticbehavior as some of the doctors
tried to far me off with.
(25:59):
But because Danny had been in that cafefor many years, the other customers,
some of them And at one point whenhe screamed and tried to hit me.
I, I just said to the assembledcustomers, I'm so sorry.
And one of the customers said, youmust never apologize for your child.
She said, Danny can do no wrong.
Dr-Colette-Ryan-PhD (26:21):
Oh, I love that.
Thank that customer for me.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And I never done any autism (26:26):
undefined
awareness training on her.
I'd never told her about thesocial model of disability.
She had just got to.
Be familiar with Danny.
Again, to understand that he wasdifferent and that he had needs,
but that she was fond of him.
And I think that was an organic wayof working with a child, but also
(26:53):
working with a wider environment.
And as far as possible, thefamilies you're working with,
they're May Kwa You, is it?
May Kwa Ku, that's it.
May
Kwa
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Ku. (27:04):
undefined
You know, what I would suggest to them,and this is about going into the wider
world, is being brave and, and justthinking, we'll just do this bit by bit.
We'll do it very, very slowly.
But we will hope that other peoplewill gradually come to see that we're
not threatening them.
But
(27:26):
if we can't, we can't.
It's really hard.
The word that you used, brave, haveyou used that for yourself lately?
No, but I
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: think I look back and I was (27:38):
undefined
aware that I had to be, I hadto undo my own conditioning.
My, my parents said,you never make a scene.
You must never draw attention to yourself.
And of course, being out with Danny, wewere permanently drawing attention to us.
And I just thought, I loveDanny so much and he's fine.
(27:59):
And And I must undo my conditioning.
And that was brave.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Thank you. (28:05):
undefined
Not half as brave asDanny's been in his life.
But we just have to sometimestake a leap of faith.
But I think we shouldn't blamepeople for being frightened.
That's parents.
But also parents need to remember thatwhat we, our children go through will
(28:26):
require more courage than we've got.
And we have to respect them.
Jules-AutisticRadio.com (28:28):
I want to take us back to something
I've written in the text.
And it's about the relationship betweenthe value of the practitioner as a person.
Their whole rounded self withall of their skills that they
bring to it, not just their owntraining and the training itself.
(28:53):
It seems to me that both of you aredescribing the importance of the
personal way above the doctrine ofthe therapy or the support behind
Maurice-ELAS-Autistic-Group (29:06):
it.
Absolutely.
We're both shaking our head, Virginia.
In radio,
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: it's better if you speak. (29:19):
undefined
Turning
Jules-AutisticRadio.com (29:22):
your cameras off will stop you communicating secretly
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: with each (29:27):
undefined
Jules-AutisticRadio.com (29:31):
other.
It goes back to this thing
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: of believing in the (29:33):
undefined
individual, doesn't it?
And I've known ABA therapists who seemedfairly impersonal and they made absolutely
no progress getting through to Danny.
They were old school and I've knownABA therapists who clearly really enjoy
(29:53):
being with him and almost instinctivelylight him up so that he actually wants
to be with them and they with him.
Person centered is, is the phrasethat is used a lot in the UK,
both in adult and in child care.
I feel that that has to bethe core of everything really.
(30:15):
If that echoes what youwere suggesting, Jules.
Dr-Colette-Ryan-PhD (30:18):
If I could add one word to that, I would,
I would add family center
because an individual is part of a family.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: And Would you then go along if (30:29):
undefined
different families within theirdifferent cultures find some things more
tolerable or intolerable than others?
Is there a need for the sake of thechild's relationship with their family
to guide the child to make certainadaptations in one family that you
(30:55):
wouldn't guide a child in another family?
Similar adaptations.
Totally.
Yes.
Maurice-ELAS-Autistic-Group (31:04):
No, if a child disagrees, I mean, that , can't
get anything worse than being a child.
Seeing another child allowed somethingthat you're not getting and then anything
more of a cause to behave in a way thattries to force that to be dealt with.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Yeah. (31:20):
undefined
That's the crux and it's
a sense of justice or injustice aswell, but it lies at the heart of that.
And, and that, is that why we haveto decide what priorities we have?
Yeah.
(31:40):
In terms of family and individual voice.
Maurice-ELAS-Autistic-Group (31:46):
So condition knowledge and the science of things
like sensitivities can, could of itselfdefine things that are priorities
because their immediate well being.
The one that's the biggie for me,clothes choices and freedom in those,
(32:12):
and you could have either, you couldhave either conservative families or,
The, the school institution that wantsto fit everyone into the same box and
that both of those are going to collidewith, but behavioral outcome to be
oppressed to the realisttowards the status quo and adapt
to it is colliding with the
(32:34):
comfort that can very physically hurt.
So it's not surprising that's
led to old school failures.
To flow with the individual,
Dr-Colette-Ryan-PhD (32:42):
I love Maurice that you brought up the idea of clothing, I
think that's one of the more personalthings that we get to do for ourselves.
That we can pick out our own clothingis something that, as we become a big
kid, we're allowed that privilege.
I love that you brought up the ideaof the conforming to the clothing
(33:07):
that is A requirement and how we cansupport individuals to develop that
sense of agency maybe by adaptingor developing processes where we can
understand when someone can't wear theblazer or the tie or the, the black
(33:28):
shoes that are required by a school.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: , I was billed by Jules as someone (33:32):
undefined
who's involved in settingup a school that used ABA.
There was no schooluniform, quite deliberately.
, and with, with Danny, he will choose hisclothes and he will often, As I, as a , a
(33:52):
neurotypical looker will say they'reback to front and inside out, and he's
put them on and that's fine indoors.
But this is where I think thissort of ethical questions.
If he went out into communitywearing inside out, back to front
clothes, would he be vulnerable toridicule, stigmatizing, et cetera?
(34:17):
That I can protect him from by justgently encouraging him to reverse them
and put them on in the way that mostof the rest of us would wear them.
I think any parent and any sensibleadult, be they a ABA therapist or not.
Would learn, would attune to thefact that he is sensitive he's got a
(34:40):
hoodie that he never wants to wear.
Because it's sensorily unpleasant forhim, so we don't make him wear it.
I think a lot of us canpick up on those things.
If parents or people around themaren't noticing that this might
be a sensory issue, then theythemselves need a bit of training.
Dr-Colette-Ryan-PhD (35:00):
Absolutely.
Part of the work that we need to do here
no one talks in college about whatyour proprioceptive or your vestibular
sense are, or how you can have ahigh arousal or a lower arousal.
So bringing that piece ofinformation to Japan is as a gift
(35:22):
that I'm very excited to be able
To be giving great
Jules-AutisticRadio.com (35:27):
I'm wrapped in the conversation, hearing you guys agree
with each other, describe similaritiesand processes that make sense, and also
chime with the neurodiversity paradigmthat we're dealing with at the moment.
Before we say goodbye toyou, there's two projects.
(35:50):
That I want you to showcase.
. Virginia, please talk to usabout the book that you've just
published, and then Collette.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: Thank you very much for (35:57):
undefined
the plug.
It's called Danny's People, amemoir and manifesto about autism.
The journey that he and I havebeen on he's now a 31 year old.
It includes two chapters about ABA.
One saying ABA, the good news questionmark, and The ABA, The Controversy, and
(36:23):
I say about it that it's, ABA weavesits way through our story like a snake
with the dual potential from the ancientsymbolic myths for harm and thriving.
I've been on a journey about ABA throughDanny, but Then the school we set
(36:44):
up, but also through all the amazingpeople we've met, including autistic
people who have been critical, and Ifeel there's still a journey to be had.
And my, my plea is to go on havingthese sorts of discussions really.
And.
(37:05):
What worries me about the dispute isthat we end up talking about what are
possibly nuances in the wider world whenautistic people are being abused, sent
into awful institutions, being surrounded,you know, like four to one restrained by
(37:29):
people who know nothing about autism and
who If you don't know the first thingabout things like sensory sensitivities
and building relationships, whatworries me is that if we're too busy
carving out our own little niche,intervention versus intervention, these
wider, massive social deficiencies andlack of funding, certainly in the UK,
(37:53):
we're not doing service to the biggerpicture, to the bigger prevailing needs.
My book just isn't just about JPA,it's, it's about the struggles we've
been through because doctors didn'tbelieve that Danny was unwell, about
some amazing supporters, people we'vemet who've become friends, and Danny has
(38:19):
the last word, although he's non verbal.
Dr-Colette-Ryan-PhD:
. I, I love that you talked about the book as being a journey,
because as a floor timer, that'swhat we, we always talk about is.
It's the journey that we're onto gain that understanding , of
neurodiversity of the autisticcommunity and what their needs are.
(38:44):
I've taken my, my show on the road, asthey say, we have developed a school that
is a floor time based school with a littletiny bit of Reggio Amelia put in to it.
Our school is called theNeurodiversity School in Tokyo.
(39:04):
. We started in September with 10 children.
. And hopefully get to 15 students in ourbeautiful building that has a music room
and a sensory room and an art room anda library area and space, so much space
for play and interaction and experiences.
(39:27):
Our children are between threeand 12 years old, and every one
of them is absolutely wonderful.
And I appreciate the opportunity thatAutistic Radio has just given me to be
able to talk about our wonderful schoolthat I've been involved with for about
two and a half years, and we have finallyseen it come to life in September.
Dr-Virginia-Bovell-Phd-Parent-ABA-Pioneer: That's so fantastic. (39:53):
undefined
So we've both got experience ofsetting up a school in a unfamiliar
environment where people might not knowtoo much about what we're trying to do.
And I would echo, absolutely.
It's great that autistic radiogiven us this opportunity.
And I, what I love is, is theopportunity to have these conversations
(40:17):
in a safe, respectful way, whichis more important than anything.
I mean, we're all learningall the time, aren't we?
And we need all listening andneurotypicals tend not to listen
enough to autistic voices.
And I'm very grateful that AutisticRadio are actually listening to
neurotypical voices, like you
(40:40):
said, and there's far more giving andgenerosity from the autistic population
than many neurotypicals realize.
That's a really bad thing.
Dr-Colette-Ryan-PhD (40:49):
And I love the opportunity to talk about
neurodiversity and, and hopefullysupporting others and gaining an
understanding of what neurodiversity is.
Jules-AutisticRadio.com (41:00):
It's lovely when your guests come and do your job for you,
describing what we're here for on artisticradio to bring together people who come
from slightly different backgrounds,slightly different ways of thinking,
but find similarity and communityaround the neurodiversity paradigm.
(41:26):
A voice that gets.
Put out there into the ether forother people to be influenced by.
Please join us again, you guys come back,talk to us again, express your experiences
here through Autistic Radio so that wecan follow the stories more closely.
Thank you again today.
(41:47):
Thank you, thank you, Dr.
Virginia Bovell and thank you, Dr.
Colette Ryan.
Thank you.
Arigato gozaimasu.
Would you like to say that in Japanese again for me?
Dr-Colette-Ryan-PhD (41:59):
I sure will.
Arigato gozaimasu.
Jules-AutisticRadio.com (42:03):
Arigato.
That's the only Japanese I know.
Autistic radio is personal and it'sinformal, which means that those
taking part speak only for themselves.
(42:24):
If they mention an organizationthat they work for or they're a
member of, they're not speakingon behalf of that organization.
We shouldn't take anyimplication from that.
It's also the case that people'sopinions change over time.
So while this recording Is there forever?
(42:47):
People change.
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