April 15, 2025 • 42 mins
Autistic Radio presented at The UK SBA conference 2025:
This conversation is of Jules reporting of his experience to the Autistic Association SCIO Trustees.
We are pleased to say that Autistic Association is also Presenting at the PBS conference; BILD in May having received an offer from the organisation revising an initial error of communication.
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
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."
The big conversation we need to have in autism is the one about behaviourism.
Our project here is opening channels of communication.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
Hello again, and thank you to all thepeople in all the different countries
and all the different professions andall the different individuals who are
listening to our words at Autistic radio.
Today, we're making a grouppodcast after the event, the
(00:27):
uk.
Society for Behavior Analystsannual Conference 2025,
which we attended.
It's obviously quite acontroversial subject, A B, A,
all the way around the world.
And also here in the uk themajority of organizations who
(00:52):
work to represent autistic people.
Take a very strong stance.
The stance is ban a, B, A ban,
PBS, ban everything that fails torecognize the implementation of
(01:16):
the neurodiversityparadigm, as we now call it.
And.
That is entirely understandable given thehistory of how autistic people have been
dealt with over the years and continueto be dealt with in different countries.
(01:40):
So why are we willing?
As autistic or radio and autisticassociation, the autistic
charity completely run byautistic people here in the uk.
Why are we willing to engage?
(02:01):
I think our grouprecognizes that protest can.
Create change, but there's alwaysthe room beyond protest for people to
(02:23):
discuss, to try to modify or engage.
To try and explain.
To try and explain theautistic sensibility.
To try and explain how it really feels tobe us, and if we give the people who now
(02:48):
are the bogey men, the the people who areused as the example of the worst way of
dealing with autistic people historically.
If we engage with them, thenperhaps that's where we can
(03:11):
make the most difference.
That's how we can change smallthings that might reach out to
the largest number of people.
So while I'm sure that protest willcontinue and increase, I also hope.
(03:33):
Engagement with those communities andnegotiation with those communities
will bear fruit for autistic people.
Before I talk about the UK SBAI, I wantto open the floor to the group here.
We have a number of people here.
Is there anything in what I'vesaid that that doesn't fit with
(03:58):
how you guys feel about this?
I.
No, I totally agree what you said, Jules.
I mean, what you've put forward aswell is the understanding of why there
is protests and apprehension andsuspicion over the a, b, A and
(04:21):
kinda similar behavioral stuffbecause of the history and badly.
And there's the understanding thereof why there's a massive protest and
you know why there's a pushback on
(04:42):
it.
I mean, I totally get it myself,but also understand that, that the
approach that we are taking is to havethat conversation be involved with
people are more progressive, just.
Get an understanding and to actuallybring our views within rather than just
(05:08):
be outside.
Because being protesting, youcan protest by a lot of things
without knowing the full facts.
You just go by theinformation that you're given.
But if you can get more information,more facts, and you may be, you know,
learn.
More positive than you realizethat's something worthwhile doing.
(05:30):
I'm certainly in agreement with,uh, what we've done so far.
Yeah.
It's like we have to see if thereare possibilities rather than
just outright refusal to engage.
'cause non-engagement itselfis a form of engagement.
It is just, you know.
(05:51):
Yeah, absolutely.
I think that we are an important voiceand that to be inside this, you know,
they need, they need almost like a testgroup of people in there to to, to the
who can speak and react and respond in theproper way without protest more, with, you
know, sort of the knowledge that you'retrying to work with instead of against.
(06:14):
Yeah.
It's interesting that you say that, Lucy.
I think these organizations do thinksometimes that they already do have
a representative voice within them,and they feel that they already have
opened their doors for conversations,but it doesn't look like that
(06:37):
to me for a couple of reasons.
The first thing is, what I'vewitnessed over the years is autistic
people validly being invited to telltheir stories, tell their history.
It looks a little bit likea kind of a kind of porn.
(07:03):
An
autistic person is invited to entertainwith their struggle, and the validity in
that is probably to remind people of the,the reason they got into their profession,
(07:25):
the reason that they want to be part ofthe good guys, the people who support.
A disabled group.
So having somebody who is clearlydisabled telling their difficult
story has a validity there.
(07:45):
But it does look very often as thoughthat is the only way that autistic
people get a voice when there arelarge groups of professionals to speak.
I myself have given heartfelt sentencesand talked personally before to
(08:11):
professionals, and you get a feedbackthat says, wow, that was powerful.
Wow, that was emotional, but.
Surely there's room for well-organizedautistic people to engage at a more
(08:33):
professional eye to eye level thanbeing paraded as almost victims.
I am unwilling to take a victim status.
And I know you guys are, you've all haddifferent experiences and careers and it's
(08:56):
inappropriate for us to take that role.
We, we need a role where we arerespected for our competency
rather than being an example.
Of
our disability or difficulty.
(09:20):
Have I said anything thatdisturbs people with that?
Are you comfortable?
No, that's
very positive, Jules.
No, it's very positive.
I mean, I get what you're saying.
I mean, I've been involved in manythings, autistic, and not when, I
mean not, I mean, I'm talking about.
Being invited to these mental healthcan meetings, et cetera, and give
(09:44):
your story and there's a, this kinda,you give this story and you actually
get through quite a journey by givingthis story and then it's like clap.
And then it's all well done.
That's great.
You've been very brave in doing that.
And then there doesn't seemto be anything more than that.
(10:06):
It doesn't even seem to be any respect.
It's just like a pat in the head,and I think a lot of people can
feel that way if they don't feelthey've been taken seriously enough.
It's just basically a tick boxexercise and to give your experience,
your life experience, especially if
you're,
you know, a good age, youknow, midlife onwards.
I mean, even before then,it's still a good experience.
(10:29):
You're given that personal perspective.
And not to feel you've beentaken seriously, you know,
it can be quite damaging.
Yeah.
I, I, I feel like it's kind ofhaving one person come up and tell
their story and talk about theirjourney and all this is, it's almost.
Like catching, catching a s spiderunder, under a glass put on display for
(10:52):
everybody to look at for a little whilebefore you release it back into the wild.
It doesn't seem like there's very muchto it, apart from just being able to
tick that box that we had somebodywith an authentic experience coming in.
I mean, that authentic experience,something they should be valuing and
maybe using a bit more rather thanjust sort of bringing somebody up
to speak and then say, well done,and sending them on their way.
(11:13):
There should be a furtherconversation from there.
I want to also come back to say thatwhen I was at this conference, I,
I hang, I hung out.
I made myself very visible, veryobvious, and people came to speak to me.
(11:35):
A number of people came to speak tome about their own neurodivergence.
Or about the neurodivergenceof a family member.
The percentage of people who workin a BA slightly surprised me.
(11:56):
So it could be possible for theseorganizations to, to say, well, look,
we we're employing Neurodiverse people.
This organization, the UK SBA, hasat least one person who is openly
autistic on their board, not justas a student member as they were in
(12:20):
the past, but now as a full member.
And they have a autism specialinterest group, they call it,
which is an unfortunate title, but.
It's a kind of task force forengagement with the autistic community
that's starting to get going.
(12:42):
They could easily say, well, look, weare doing it ourselves, but I think
that's wrong because there's a realbig difference between somebody who is
entirely engaged within the profession.
And somebody who is a complete outsiderof the profession and a professional
(13:06):
in their own right maybe, or a somebodywho works within a charity like our
charity, perhaps the outside influenceis entirely different from people
who are already within the community.
Is that the A-B-A-P-B-Scommunity you're referring to?
(13:28):
Yeah, yeah.
With within, within a b, A and PBS.
There are lots of, um, autistic peoplethat I'm coming across and it's almost as
though there autism attracted them to the.
Study of how human beings worked it.
(13:51):
It's a little bit like when I meetpsychiatrists and psychologists.
The reason they often got intopsychiatry or psychology was a family
member or their own experience ofthe need to understand themselves.
I think within a b, a and PBS thereare a number of autistic people who
(14:17):
have specifically taken that professionas a, as a journey, as a, as a way of
looking at themselves and then realizingtheir autism as they've gone along.
So inside the, the, theprofessions, there are an awful
lot of autistic people, however.
(14:39):
What I'm trying to say is that eventhose people still need to have a
different experience that comes frombeing outside because the vast majority
of autistic people do not have thattraining experience or background.
And some would say indoctrinationeven into a way of thinking,
(15:04):
though I think that's a bit harsh.
That would be a. That wouldbe a protest of you, I think.
Isn't that a heightened state ofadvocacy that they're, um, performing?
It could be, but they could alsofeel for lots of reasons restricted
in speaking about their ownautism within their professions.
(15:28):
If we, when we, sorry.
Waiting for the dog to stopfrom barking in the background.
It sounds similar to what I said inthe comments there about when you,
eventually a minority group gets apolitical representative, there's
often a suspicion amongst thatgroup about this representative.
'cause they're in there,so they're compromised.
(15:52):
Yeah.
There's a, there's a compromiseas somebody else has written,
sell out in the text there.
As a perception that could happen.
So course they, yeah.
Yeah, exactly.
Well, I think the people within theprofessions are unlikely to be able
to speak out in the way that peopleoutside the profession can speak out.
(16:16):
That that's a general feeling.
It might, it might notfeel correct for them.
And as far as the idea of people fromthe outside community, from the autism
community, the, the, the protest,or even just the vaguely interested
(16:38):
part, I am sure that there would bea suspicion that people inside the
insiders would not be representing.
Those of us, the majority of us who areoutside the profession in, in the way
that they might wish, there would be asuspicion that it's not really a voice
(17:01):
of the general autistic population,because that might be different.
So let's go on, let's, let's go onto what I did at the conference.
I prepared.
Around seven different uniquepresentations for the conference in
(17:22):
the weeks going up to the conference.
They all had slightly different flavors,but generally they had similar themes.
Well understand so far a bit of the stuffthat Jules has raised and discussed.
I mean, the a, BA stuff, you know,it's, it's so sensitive because
(17:43):
of the background of it all, thehistory of it all, and because of
what it's called and behaviorism,it's like the history of it is.
Basically the promotion ofknocking autism out of people,
(18:03):
like training them to autism or
the autistic behaviors to be putout people, which is totally,
you know, you know, inhumanein many reviews is like, like.
Of the way autism has been lookedat in the past and still, and
(18:27):
still in many people's eyes today,is that autism is a deficiency.
It's a disability, it's somethingwrong, and it's something that
should be eradicated, should beremoved, should be cured of from.
So to be involved in the discussionswith the organizations that are kinda
(18:49):
linked to that sort of historic kindabehavior is always gonna be a tough one.
As Joe I spoke about and what, what we'vealready kinda discussed is you better
been within and making these dis, youknow, having these discussions within
rather than protesting from the outside.
So.
As many views as possible and as muchas information as possible and to be
included as much as possible and get as
(19:11):
much respect as possible.
And
uh, that's why I'm reallykeen on what jus is doing.
Yeah.
It's wise to know your enemy, uh, 'causehe might turn out and not be your enemy.
Or you can negotiatesome kind of peace pact.
(19:34):
I'm, I'm curious about yourself, Harry,because you've been involved in activism
and sort of minor politics, communitypolitics and stuff, and that kinda
engagement with these, uh, institutionsand groups who may or may not be, you
know, representing you, but you haveto have the conversations 'cause we
all live in the same world unless you.
(20:00):
If we ask ourselves, like if I wasa job, what kinda job would I be?
An awful lot of autistic peoplethink go on this journey of wanting
to be an advocate and explorepossibilities for themselves and
others and to help and assist in that.
And you know, there are waysof doing that and sometimes it
is engaging with institutions.
(20:23):
Yeah.
It's all a very difficult situationfor all of us, for those people who
want to advocate and work towardsthat, and also those people receiving
that advocacy instead of using all ofthose presentations that I prepared.
(20:50):
I, you, I worked through them inmy head and I had them in my head.
And when it came to standing up in frontof the, the group of people who were
there, which was the president of theassociation and several of the board
members and a few other particularlyinteresting parties, it was a smallish
(21:11):
group of 40 or so people, maybe more.
I decided to just go entirely offscript and just speak to them.
And not only that, I encouragedthem to come back to me
and create the presentationthemselves by asking questions
or putting forward possibilities.
(21:34):
And the one I remember most was one of theboard members challenged me and said that.
Why is it that I'm taking a differentposition or we as a group are taking
a different position to the generalprotest that happens out there?
(21:54):
And I said that I thought actually thatthat was a normal part of the autistic
experience, that autistic people donot like to be told what to think.
And as we.
Find our autism and identify ourselvesas autistic in our adult lives.
(22:18):
One of the things we do is to search outother autistic people and, and they tend
to try to recruit us immediately intothe orthodoxy of ban A, b, A, et cetera.
But then I said immediately that, however,I. Have right from the start of the
(22:38):
podcast series that we made with them.
Had in there in the notes the phrase thatI want to change a, B, A, I just don't
know what it is that I want to change yet.
So I was trying to get across theposition that I am entirely sure that
there are parts of what the autisticcommunity are advocating as against.
(23:06):
Traditional A, B, A as it hasbeen practiced throughout the
world that need to be addressed.
I'm not going there just tosay, how can I platform them?
I want to actually be a usefulmember to my own community as well,
(23:26):
which is to change some of thethings that are still happening.
Things that this group of people were.
Quite clearly trying to distancethemselves from, and they've
made some big steps in thatmoving their own organization to
be entirely UK based and not soinfluenced from the whole worldview.
(23:49):
I. But I also put forward the point thatbecause of the increase in population
around the world and 'cause of myexperience traveling in India and
Indonesia, what I saw as a b, a in theold school type of a, BA, the conversion
therapy type of a BA, that is constantlybeing criticized by them and the autistic
(24:10):
group being promoted to the middleclasses so that the middle classes.
We're not particularly interestedin the neurodiversity paradigm that
we have the interest in over here.
The, the emerging economy middle classwants to have their kids sorted out so
(24:30):
that they succeed in a, in a competitivemarket and normalized as much as possible.
And so that the parents themselves arequite interested in the idea of retraining
their children to be less flappy and
so.
It's not as I'm going there to notgive them uncomfortable truths.
(24:53):
In fact, afterwards people come up to meand said that some of the things I said
were rather challenging, but they feltthat those challenges need to be heard in
a wider manner throughout the profession.
Thank you for the text there.
(25:14):
The text puts that we have neversaid we are pro A, B, A or even PBS.
Either.
There's a third mind possible here.
Well, without doubt, I don't thinkany of us are comfortable with the
examples of a B, A from the past, butI also know that some of the people
(25:36):
who were at that conference and whotake part in podcast are absolutely.
Not comfortable with whathas happened in the past.
They are going through a,a period of reflection and
they are looking for reconciliation.
(25:57):
. The other thing that I was there forwas to describe how the autistic radio
model was a unique way of creating aforum where we felt that we had an equal
eye to eye opportunity to speak to theprofessionals, whereas all the other
forums that they create fail to do that.
(26:20):
I use the word fail to say that.
Things needed to change fairlyoften in my presentation.
The thing that I've learned, youknow, when being suspicious or being
actually even against something, apractice of something is sometimes
(26:44):
you can't always, well, sometimesit's better not to all just say no.
It's better to find out thefull fags of something that
you.
Disagree with in terms of theinformation that you have that makes
you disagree with it in the first place.
So to have the conversation to get as muchinformation as possible, which may even
(27:05):
change your view or kinda certainly softenyour view on a particular thing like
a BA, which is I, I think quitedifficult to say actually.
Just saying that, butit's like, to be fair.
To be as fair as possible, but thenagain, it has to come both ways.
(27:28):
The fairness.
But I do agree with what's been saidso far is to have that conversation.
It's to be involved and not justsaying no and just protesting because
you don't agree with somethingbecause of information you have.
Because there's, there's thingsthat have been, information that's
been provided, experience havebeen provided that may be from an
(27:51):
older model or a more worldwide model,like a US model, rather than the UK model,
which is meant to be more progressive.
So to be as involved and havethe much conversation as possible
is great, but what also needsto be is respect coming from.
(28:14):
Contribution.
Before I went on stage, I spoke toone of the organizers who is als,
who also has a, an important rolewithin their organization, and I asked
them, what single thing does thisgroup of people want to hear from me?
(28:41):
What is the thing I could saythat would help them the most?
And she said to me that they are afraid.
They are nervous that you are going togo and stand out there and lambast them.
(29:07):
And attack them and makethem feel uncomfortable.
So I took that on board as thoughI hadn't already taken it on board,
but I, it definitely concentratedmy mind on that one thing.
So I stood up in front of them and I putmy hands in the air and I said, yes, the.
(29:32):
First word of this presentation is yes.
And the last word of thispresentation is, yes.
Yes.
We can engage.
Yes, we can listen as you explain.
Yes, we can have a meaningfulconversation and input.
Yes, we can have a conversation thatis entirely comfortable for you as a
(29:58):
profession and us as an autistic group.
And it set the tone for the whole thing.
Yes.
I was there also reflecting some of thethings that people had asked me to reflect
in the emails to news@autisticradio.com.
I, I told them that the majority view thatI had read from those emails was that.
(30:28):
They needed to understand the relationshipbetween autistic people and masking,
and that they really didn't understandthe complexities of masking and they
didn't understand how they themselvescould be encouraging the negative
(30:51):
experiences of masking that can happen.
I also told them from the emails thatI had received that one of the most
important things from the autisticcommunity was to be recognized as having
(31:15):
an ability to understand ourselves thatwe could then I. Express because the
people who put those emails to me gaveme stories where they felt as though they
had put all their words together, buttheir words hadn't been received in the
(31:40):
communication that they had intended.
I emphasized the difference incommunication between us, but I also tried
to say to them that the communicationthat we have is not incorrect for us.
(32:02):
I think the third point I triedto take from the emails was,
fuck, it's gone outta my head.
It.
I had a really good sentence therewas about empathy and how what the
autistic people were seeing whenthey saw the demonstrations of
(32:26):
how some of the programs that arebased on behaviorism are applied.
When we view them, ourempathy is with the the child.
And we see things that the child isdoing or how the child is behaving and
(32:48):
reacting from the empathy that we haveof sameness, that they misunderstand
and that we can see how the childis actually adapting and, and.
Covering up and, and maskingand cheating the system.
(33:10):
So what they are being involvedwith as a therapy or as a support
might not be as appropriate as the,the practitioner taking, taking
the program on, believes it to be.
That they might be ignoring what wecan tell and see and witness through
(33:35):
our empathy with other autisticpeople, particularly the children,
and that that information couldreally inform them if they, if they
were willing to engage with us.
Okay.
I'm gonna read out three ofthe texts from the texters.
They don't necessarily follow my, um,train of thought, but here they are.
(34:00):
I often draw a parallel with engaging withemployment and the workforce as though I
believe the text is saying that there isa, an antagonism, a a power structure.
That's, that's evidentafter I talked about what.
Was the most important thing to say.
(34:21):
Some puts here the institutions areconstantly afraid it's their default.
And another one is that empathy is notgood enough for institutional experts.
Question mark.
Well, that last one I,I think is antagonistic.
I would say it's surely it's thereality under the, under the.
(34:46):
Double empathy problem concept that
it's easier to empathize withpeople who have more similarity.
So it's easier for us to empathize withthe autistic person and see and understand
what might be going on inside their headsthan it is for a non-autistic person.
(35:08):
And then conversely, theother way around that.
We perhaps miss some of the machinationsinside a non-autistic person's head,
and that non-autistic person is veryoften the institutional expert, usually
following science in therapeutic practice.
(35:32):
Yeah.
Well, yeah, I think thatthat probably is the case.
That people in research and science,despite their best intentions, if
they're not autistic, might not beable to quite grasp everything in the
(35:54):
way that an autistic person would.
And that's what they try to do.
They try to communicate with usto try and get those insights.
But often it comes on their own terms.
Which leads me to talk about how Idescribe the difference with autistic
radio and the model that we are creating,which is entirely unique because we
(36:19):
create a forum which invites them to comeand speak with us on an equal footing.
Camera's off just in text.
No de interrupting people being given along opportunity to express themselves.
All the silence is ignored,so we don't have to feel as
(36:39):
though we're put on the spot.
We don't have to keep gabbling andtalking as you would if you were
at a conference or in a meeting.
And then the editing process is there to.
Make it so that people speak ina very succinct, succinct way, so
(37:00):
that the listener can actually graspwhat maybe the professional or the
artistic person is trying to say.
So it helps both parties and I madethem laugh when I described how I had
to edit a great deal when it was anon-autistic person because of all of the.
(37:22):
Expectation, a non-autistic person hasto, to fill the air, to fill the space,
to, to use many, many words, whereas theedit comes out a lot clearer and more,
well, more authentic to actually whatthey're trying to say in many cases.
(37:42):
Yeah.
But.
Emphasize how many of the, well, infact, I don't know anybody who hasn't
said it yet, that the people who come asnon-autistic professionals find the format
(38:05):
that we create refreshing themselves.
They find it enablesthem to get their ideas.
More clearly that they are also releasedfrom doing all of the social stuff, that
they end up in a much more comfortablesituation than that they are when they
are performing on Zoom to cameras andtrying to make sure that they get their
(38:31):
words in that the whole way that we do itenables them to come across well as well.
Yeah, so outside the box, very often weare masking to connect to and engage with
the neurotypical normative experience.
But is the reverse happening?
Uh, is a neurotypical
(38:53):
normative individual having to perform forthe autistic or neurodivergent experience?
Well, you bring up a point and.
It's possible that some of thecontributors will feel like that,
but so far most have said they findit simpler and more refreshing.
(39:18):
So I'm happy with it at the moment.
We can take, we can take advice from themas we progress to make it easier for them.
Yeah, I think it opens up thisspace for that thugg mind.
Shared mutual experience.
So to finalize things, after theconference, the president contacted
(39:45):
me to say that our presentationwas one of the highlights of the
conference, and that was reiterated bya couple of other board members also.
And they also contacted to saythat they were putting us forward
(40:07):
in, in ways to try and engage.
Uh, there were also people who just wantedto speak quietly about a family member
or themselves, and I was happy as anadvocate to give them that personal time.
One thing did come up immediately,and that was an invitation to
(40:33):
present at the PBS main conference,positive behavioral support.
So one is the main conference fora B, A, and the second one is the
main conference for PBS in the uk.
And.
(40:54):
Unfortunately, we are expected togo there and subsidize the costs.
We are expected to go there even thoughthey've been, they feel they've been
quite generous with offering accommodationand access to the whole conference . If
I went to that conference, I wouldhave to take two days off from my
(41:18):
profession and I would be out of pocket.
And I have to say, having just beenoutta pocket at one conference,
I've, I've actually said to them, no,unless they cover the my losses and
make sure I'm not paying anything orthe charity isn't paying anything.
(41:41):
I can't take part in that,which is a real shame.
It's a shame for us because, youknow, it's, it's a, not only a
national conference, but it'sbeamed out internationally.
But I can't justify spending tosupport a multi-billion pound industry.
(42:05):
Your
time,
our time, your expertise, our expertiseis worth more than what's being
offered, and it's the approach whereeven though it's a good opportunity,
a great opportunity, the way theopportunity has been presented, it's.
(42:31):
The work that we've been neededand as needed for it to be
fruitful to everyone involved.
This has been an autistic associationproduction for autistic radio.
If you have comments, if you areinterested in furthering this discussion,
(42:57):
contact news at autistic radio.
Com.
Thank you so much for givingyour attention to us today.
There are so many other things thatyou could have done, and it's lovely
to see the increasing numbers ofpeople throughout the world taking
(43:20):
part in the autistic radio project.
Hello again, and thank you to all thepeople in all the different countries
and all the different professions andall the different individuals who are
listening to our words at Autistic radio.
Today, we're making a grouppodcast after the event, the
(00:27):
uk.
Society for Behavior Analystsannual Conference 2025,
which we attended.
It's obviously quite acontroversial subject, A B, A,
all the way around the world.
And also here in the uk themajority of organizations who
(00:52):
work to represent autistic people.
Take a very strong stance.
The stance is ban a, B, A ban,
PBS, ban everything that fails torecognize the implementation of
(01:16):
the neurodiversityparadigm, as we now call it.
And.
That is entirely understandable given thehistory of how autistic people have been
dealt with over the years and continueto be dealt with in different countries.
(01:40):
So why are we willing?
As autistic or radio and autisticassociation, the autistic
charity completely run byautistic people here in the uk.
Why are we willing to engage?
(02:01):
I think our grouprecognizes that protest can.
Create change, but there's alwaysthe room beyond protest for people to
(02:23):
discuss, to try to modify or engage.
To try and explain.
To try and explain theautistic sensibility.
To try and explain how it really feels tobe us, and if we give the people who now
(02:48):
are the bogey men, the the people who areused as the example of the worst way of
dealing with autistic people historically.
If we engage with them, thenperhaps that's where we can
(03:11):
make the most difference.
That's how we can change smallthings that might reach out to
the largest number of people.
So while I'm sure that protest willcontinue and increase, I also hope.
(03:33):
Engagement with those communities andnegotiation with those communities
will bear fruit for autistic people.
Before I talk about the UK SBAI, I wantto open the floor to the group here.
We have a number of people here.
Is there anything in what I'vesaid that that doesn't fit with
(03:58):
how you guys feel about this?
I.
No, I totally agree what you said, Jules.
I mean, what you've put forward aswell is the understanding of why there
is protests and apprehension andsuspicion over the a, b, A and
(04:21):
kinda similar behavioral stuffbecause of the history and badly.
And there's the understanding thereof why there's a massive protest and
you know why there's a pushback on
(04:42):
it.
I mean, I totally get it myself,but also understand that, that the
approach that we are taking is to havethat conversation be involved with
people are more progressive, just.
Get an understanding and to actuallybring our views within rather than just
(05:08):
be outside.
Because being protesting, youcan protest by a lot of things
without knowing the full facts.
You just go by theinformation that you're given.
But if you can get more information,more facts, and you may be, you know,
learn.
More positive than you realizethat's something worthwhile doing.
(05:30):
I'm certainly in agreement with,uh, what we've done so far.
Yeah.
It's like we have to see if thereare possibilities rather than
just outright refusal to engage.
'cause non-engagement itselfis a form of engagement.
It is just, you know.
(05:51):
Yeah, absolutely.
I think that we are an important voiceand that to be inside this, you know,
they need, they need almost like a testgroup of people in there to to, to the
who can speak and react and respond in theproper way without protest more, with, you
know, sort of the knowledge that you'retrying to work with instead of against.
(06:14):
Yeah.
It's interesting that you say that, Lucy.
I think these organizations do thinksometimes that they already do have
a representative voice within them,and they feel that they already have
opened their doors for conversations,but it doesn't look like that
(06:37):
to me for a couple of reasons.
The first thing is, what I'vewitnessed over the years is autistic
people validly being invited to telltheir stories, tell their history.
It looks a little bit likea kind of a kind of porn.
(07:03):
An
autistic person is invited to entertainwith their struggle, and the validity in
that is probably to remind people of the,the reason they got into their profession,
(07:25):
the reason that they want to be part ofthe good guys, the people who support.
A disabled group.
So having somebody who is clearlydisabled telling their difficult
story has a validity there.
(07:45):
But it does look very often as thoughthat is the only way that autistic
people get a voice when there arelarge groups of professionals to speak.
I myself have given heartfelt sentencesand talked personally before to
(08:11):
professionals, and you get a feedbackthat says, wow, that was powerful.
Wow, that was emotional, but.
Surely there's room for well-organizedautistic people to engage at a more
(08:33):
professional eye to eye level thanbeing paraded as almost victims.
I am unwilling to take a victim status.
And I know you guys are, you've all haddifferent experiences and careers and it's
(08:56):
inappropriate for us to take that role.
We, we need a role where we arerespected for our competency
rather than being an example.
Of
our disability or difficulty.
(09:20):
Have I said anything thatdisturbs people with that?
Are you comfortable?
No, that's
very positive, Jules.
No, it's very positive.
I mean, I get what you're saying.
I mean, I've been involved in manythings, autistic, and not when, I
mean not, I mean, I'm talking about.
Being invited to these mental healthcan meetings, et cetera, and give
(09:44):
your story and there's a, this kinda,you give this story and you actually
get through quite a journey by givingthis story and then it's like clap.
And then it's all well done.
That's great.
You've been very brave in doing that.
And then there doesn't seemto be anything more than that.
(10:06):
It doesn't even seem to be any respect.
It's just like a pat in the head,and I think a lot of people can
feel that way if they don't feelthey've been taken seriously enough.
It's just basically a tick boxexercise and to give your experience,
your life experience, especially if
you're,
you know, a good age, youknow, midlife onwards.
I mean, even before then,it's still a good experience.
(10:29):
You're given that personal perspective.
And not to feel you've beentaken seriously, you know,
it can be quite damaging.
Yeah.
I, I, I feel like it's kind ofhaving one person come up and tell
their story and talk about theirjourney and all this is, it's almost.
Like catching, catching a s spiderunder, under a glass put on display for
(10:52):
everybody to look at for a little whilebefore you release it back into the wild.
It doesn't seem like there's very muchto it, apart from just being able to
tick that box that we had somebodywith an authentic experience coming in.
I mean, that authentic experience,something they should be valuing and
maybe using a bit more rather thanjust sort of bringing somebody up
to speak and then say, well done,and sending them on their way.
(11:13):
There should be a furtherconversation from there.
I want to also come back to say thatwhen I was at this conference, I,
I hang, I hung out.
I made myself very visible, veryobvious, and people came to speak to me.
(11:35):
A number of people came to speak tome about their own neurodivergence.
Or about the neurodivergenceof a family member.
The percentage of people who workin a BA slightly surprised me.
(11:56):
So it could be possible for theseorganizations to, to say, well, look,
we we're employing Neurodiverse people.
This organization, the UK SBA, hasat least one person who is openly
autistic on their board, not justas a student member as they were in
(12:20):
the past, but now as a full member.
And they have a autism specialinterest group, they call it,
which is an unfortunate title, but.
It's a kind of task force forengagement with the autistic community
that's starting to get going.
(12:42):
They could easily say, well, look, weare doing it ourselves, but I think
that's wrong because there's a realbig difference between somebody who is
entirely engaged within the profession.
And somebody who is a complete outsiderof the profession and a professional
(13:06):
in their own right maybe, or a somebodywho works within a charity like our
charity, perhaps the outside influenceis entirely different from people
who are already within the community.
Is that the A-B-A-P-B-Scommunity you're referring to?
(13:28):
Yeah, yeah.
With within, within a b, A and PBS.
There are lots of, um, autistic peoplethat I'm coming across and it's almost as
though there autism attracted them to the.
Study of how human beings worked it.
(13:51):
It's a little bit like when I meetpsychiatrists and psychologists.
The reason they often got intopsychiatry or psychology was a family
member or their own experience ofthe need to understand themselves.
I think within a b, a and PBS thereare a number of autistic people who
(14:17):
have specifically taken that professionas a, as a journey, as a, as a way of
looking at themselves and then realizingtheir autism as they've gone along.
So inside the, the, theprofessions, there are an awful
lot of autistic people, however.
(14:39):
What I'm trying to say is that eventhose people still need to have a
different experience that comes frombeing outside because the vast majority
of autistic people do not have thattraining experience or background.
And some would say indoctrinationeven into a way of thinking,
(15:04):
though I think that's a bit harsh.
That would be a. That wouldbe a protest of you, I think.
Isn't that a heightened state ofadvocacy that they're, um, performing?
It could be, but they could alsofeel for lots of reasons restricted
in speaking about their ownautism within their professions.
(15:28):
If we, when we, sorry.
Waiting for the dog to stopfrom barking in the background.
It sounds similar to what I said inthe comments there about when you,
eventually a minority group gets apolitical representative, there's
often a suspicion amongst thatgroup about this representative.
'cause they're in there,so they're compromised.
(15:52):
Yeah.
There's a, there's a compromiseas somebody else has written,
sell out in the text there.
As a perception that could happen.
So course they, yeah.
Yeah, exactly.
Well, I think the people within theprofessions are unlikely to be able
to speak out in the way that peopleoutside the profession can speak out.
(16:16):
That that's a general feeling.
It might, it might notfeel correct for them.
And as far as the idea of people fromthe outside community, from the autism
community, the, the, the protest,or even just the vaguely interested
(16:38):
part, I am sure that there would bea suspicion that people inside the
insiders would not be representing.
Those of us, the majority of us who areoutside the profession in, in the way
that they might wish, there would be asuspicion that it's not really a voice
(17:01):
of the general autistic population,because that might be different.
So let's go on, let's, let's go onto what I did at the conference.
I prepared.
Around seven different uniquepresentations for the conference in
(17:22):
the weeks going up to the conference.
They all had slightly different flavors,but generally they had similar themes.
Well understand so far a bit of the stuffthat Jules has raised and discussed.
I mean, the a, BA stuff, you know,it's, it's so sensitive because
(17:43):
of the background of it all, thehistory of it all, and because of
what it's called and behaviorism,it's like the history of it is.
Basically the promotion ofknocking autism out of people,
(18:03):
like training them to autism or
the autistic behaviors to be putout people, which is totally,
you know, you know, inhumanein many reviews is like, like.
Of the way autism has been lookedat in the past and still, and
(18:27):
still in many people's eyes today,is that autism is a deficiency.
It's a disability, it's somethingwrong, and it's something that
should be eradicated, should beremoved, should be cured of from.
So to be involved in the discussionswith the organizations that are kinda
(18:49):
linked to that sort of historic kindabehavior is always gonna be a tough one.
As Joe I spoke about and what, what we'vealready kinda discussed is you better
been within and making these dis, youknow, having these discussions within
rather than protesting from the outside.
So.
As many views as possible and as muchas information as possible and to be
included as much as possible and get as
(19:11):
much respect as possible.
And
uh, that's why I'm reallykeen on what jus is doing.
Yeah.
It's wise to know your enemy, uh, 'causehe might turn out and not be your enemy.
Or you can negotiatesome kind of peace pact.
(19:34):
I'm, I'm curious about yourself, Harry,because you've been involved in activism
and sort of minor politics, communitypolitics and stuff, and that kinda
engagement with these, uh, institutionsand groups who may or may not be, you
know, representing you, but you haveto have the conversations 'cause we
all live in the same world unless you.
(20:00):
If we ask ourselves, like if I wasa job, what kinda job would I be?
An awful lot of autistic peoplethink go on this journey of wanting
to be an advocate and explorepossibilities for themselves and
others and to help and assist in that.
And you know, there are waysof doing that and sometimes it
is engaging with institutions.
(20:23):
Yeah.
It's all a very difficult situationfor all of us, for those people who
want to advocate and work towardsthat, and also those people receiving
that advocacy instead of using all ofthose presentations that I prepared.
(20:50):
I, you, I worked through them inmy head and I had them in my head.
And when it came to standing up in frontof the, the group of people who were
there, which was the president of theassociation and several of the board
members and a few other particularlyinteresting parties, it was a smallish
(21:11):
group of 40 or so people, maybe more.
I decided to just go entirely offscript and just speak to them.
And not only that, I encouragedthem to come back to me
and create the presentationthemselves by asking questions
or putting forward possibilities.
(21:34):
And the one I remember most was one of theboard members challenged me and said that.
Why is it that I'm taking a differentposition or we as a group are taking
a different position to the generalprotest that happens out there?
(21:54):
And I said that I thought actually thatthat was a normal part of the autistic
experience, that autistic people donot like to be told what to think.
And as we.
Find our autism and identify ourselvesas autistic in our adult lives.
(22:18):
One of the things we do is to search outother autistic people and, and they tend
to try to recruit us immediately intothe orthodoxy of ban A, b, A, et cetera.
But then I said immediately that, however,I. Have right from the start of the
(22:38):
podcast series that we made with them.
Had in there in the notes the phrase thatI want to change a, B, A, I just don't
know what it is that I want to change yet.
So I was trying to get across theposition that I am entirely sure that
there are parts of what the autisticcommunity are advocating as against.
(23:06):
Traditional A, B, A as it hasbeen practiced throughout the
world that need to be addressed.
I'm not going there just tosay, how can I platform them?
I want to actually be a usefulmember to my own community as well,
(23:26):
which is to change some of thethings that are still happening.
Things that this group of people were.
Quite clearly trying to distancethemselves from, and they've
made some big steps in thatmoving their own organization to
be entirely UK based and not soinfluenced from the whole worldview.
(23:49):
I. But I also put forward the point thatbecause of the increase in population
around the world and 'cause of myexperience traveling in India and
Indonesia, what I saw as a b, a in theold school type of a, BA, the conversion
therapy type of a BA, that is constantlybeing criticized by them and the autistic
(24:10):
group being promoted to the middleclasses so that the middle classes.
We're not particularly interestedin the neurodiversity paradigm that
we have the interest in over here.
The, the emerging economy middle classwants to have their kids sorted out so
(24:30):
that they succeed in a, in a competitivemarket and normalized as much as possible.
And so that the parents themselves arequite interested in the idea of retraining
their children to be less flappy and
so.
It's not as I'm going there to notgive them uncomfortable truths.
(24:53):
In fact, afterwards people come up to meand said that some of the things I said
were rather challenging, but they feltthat those challenges need to be heard in
a wider manner throughout the profession.
Thank you for the text there.
(25:14):
The text puts that we have neversaid we are pro A, B, A or even PBS.
Either.
There's a third mind possible here.
Well, without doubt, I don't thinkany of us are comfortable with the
examples of a B, A from the past, butI also know that some of the people
(25:36):
who were at that conference and whotake part in podcast are absolutely.
Not comfortable with whathas happened in the past.
They are going through a,a period of reflection and
they are looking for reconciliation.
(25:57):
. The other thing that I was there forwas to describe how the autistic radio
model was a unique way of creating aforum where we felt that we had an equal
eye to eye opportunity to speak to theprofessionals, whereas all the other
forums that they create fail to do that.
(26:20):
I use the word fail to say that.
Things needed to change fairlyoften in my presentation.
The thing that I've learned, youknow, when being suspicious or being
actually even against something, apractice of something is sometimes
(26:44):
you can't always, well, sometimesit's better not to all just say no.
It's better to find out thefull fags of something that
you.
Disagree with in terms of theinformation that you have that makes
you disagree with it in the first place.
So to have the conversation to get as muchinformation as possible, which may even
(27:05):
change your view or kinda certainly softenyour view on a particular thing like
a BA, which is I, I think quitedifficult to say actually.
Just saying that, butit's like, to be fair.
To be as fair as possible, but thenagain, it has to come both ways.
(27:28):
The fairness.
But I do agree with what's been saidso far is to have that conversation.
It's to be involved and not justsaying no and just protesting because
you don't agree with somethingbecause of information you have.
Because there's, there's thingsthat have been, information that's
been provided, experience havebeen provided that may be from an
(27:51):
older model or a more worldwide model,like a US model, rather than the UK model,
which is meant to be more progressive.
So to be as involved and havethe much conversation as possible
is great, but what also needsto be is respect coming from.
(28:14):
Contribution.
Before I went on stage, I spoke toone of the organizers who is als,
who also has a, an important rolewithin their organization, and I asked
them, what single thing does thisgroup of people want to hear from me?
(28:41):
What is the thing I could saythat would help them the most?
And she said to me that they are afraid.
They are nervous that you are going togo and stand out there and lambast them.
(29:07):
And attack them and makethem feel uncomfortable.
So I took that on board as thoughI hadn't already taken it on board,
but I, it definitely concentratedmy mind on that one thing.
So I stood up in front of them and I putmy hands in the air and I said, yes, the.
(29:32):
First word of this presentation is yes.
And the last word of thispresentation is, yes.
Yes.
We can engage.
Yes, we can listen as you explain.
Yes, we can have a meaningfulconversation and input.
Yes, we can have a conversation thatis entirely comfortable for you as a
(29:58):
profession and us as an autistic group.
And it set the tone for the whole thing.
Yes.
I was there also reflecting some of thethings that people had asked me to reflect
in the emails to news@autisticradio.com.
I, I told them that the majority view thatI had read from those emails was that.
(30:28):
They needed to understand the relationshipbetween autistic people and masking,
and that they really didn't understandthe complexities of masking and they
didn't understand how they themselvescould be encouraging the negative
(30:51):
experiences of masking that can happen.
I also told them from the emails thatI had received that one of the most
important things from the autisticcommunity was to be recognized as having
(31:15):
an ability to understand ourselves thatwe could then I. Express because the
people who put those emails to me gaveme stories where they felt as though they
had put all their words together, buttheir words hadn't been received in the
(31:40):
communication that they had intended.
I emphasized the difference incommunication between us, but I also tried
to say to them that the communicationthat we have is not incorrect for us.
(32:02):
I think the third point I triedto take from the emails was,
fuck, it's gone outta my head.
It.
I had a really good sentence therewas about empathy and how what the
autistic people were seeing whenthey saw the demonstrations of
(32:26):
how some of the programs that arebased on behaviorism are applied.
When we view them, ourempathy is with the the child.
And we see things that the child isdoing or how the child is behaving and
(32:48):
reacting from the empathy that we haveof sameness, that they misunderstand
and that we can see how the childis actually adapting and, and.
Covering up and, and maskingand cheating the system.
(33:10):
So what they are being involvedwith as a therapy or as a support
might not be as appropriate as the,the practitioner taking, taking
the program on, believes it to be.
That they might be ignoring what wecan tell and see and witness through
(33:35):
our empathy with other autisticpeople, particularly the children,
and that that information couldreally inform them if they, if they
were willing to engage with us.
Okay.
I'm gonna read out three ofthe texts from the texters.
They don't necessarily follow my, um,train of thought, but here they are.
(34:00):
I often draw a parallel with engaging withemployment and the workforce as though I
believe the text is saying that there isa, an antagonism, a a power structure.
That's, that's evidentafter I talked about what.
Was the most important thing to say.
(34:21):
Some puts here the institutions areconstantly afraid it's their default.
And another one is that empathy is notgood enough for institutional experts.
Question mark.
Well, that last one I,I think is antagonistic.
I would say it's surely it's thereality under the, under the.
(34:46):
Double empathy problem concept that
it's easier to empathize withpeople who have more similarity.
So it's easier for us to empathize withthe autistic person and see and understand
what might be going on inside their headsthan it is for a non-autistic person.
(35:08):
And then conversely, theother way around that.
We perhaps miss some of the machinationsinside a non-autistic person's head,
and that non-autistic person is veryoften the institutional expert, usually
following science in therapeutic practice.
(35:32):
Yeah.
Well, yeah, I think thatthat probably is the case.
That people in research and science,despite their best intentions, if
they're not autistic, might not beable to quite grasp everything in the
(35:54):
way that an autistic person would.
And that's what they try to do.
They try to communicate with usto try and get those insights.
But often it comes on their own terms.
Which leads me to talk about how Idescribe the difference with autistic
radio and the model that we are creating,which is entirely unique because we
(36:19):
create a forum which invites them to comeand speak with us on an equal footing.
Camera's off just in text.
No de interrupting people being given along opportunity to express themselves.
All the silence is ignored,so we don't have to feel as
(36:39):
though we're put on the spot.
We don't have to keep gabbling andtalking as you would if you were
at a conference or in a meeting.
And then the editing process is there to.
Make it so that people speak ina very succinct, succinct way, so
(37:00):
that the listener can actually graspwhat maybe the professional or the
artistic person is trying to say.
So it helps both parties and I madethem laugh when I described how I had
to edit a great deal when it was anon-autistic person because of all of the.
(37:22):
Expectation, a non-autistic person hasto, to fill the air, to fill the space,
to, to use many, many words, whereas theedit comes out a lot clearer and more,
well, more authentic to actually whatthey're trying to say in many cases.
(37:42):
Yeah.
But.
Emphasize how many of the, well, infact, I don't know anybody who hasn't
said it yet, that the people who come asnon-autistic professionals find the format
(38:05):
that we create refreshing themselves.
They find it enablesthem to get their ideas.
More clearly that they are also releasedfrom doing all of the social stuff, that
they end up in a much more comfortablesituation than that they are when they
are performing on Zoom to cameras andtrying to make sure that they get their
(38:31):
words in that the whole way that we do itenables them to come across well as well.
Yeah, so outside the box, very often weare masking to connect to and engage with
the neurotypical normative experience.
But is the reverse happening?
Uh, is a neurotypical
(38:53):
normative individual having to perform forthe autistic or neurodivergent experience?
Well, you bring up a point and.
It's possible that some of thecontributors will feel like that,
but so far most have said they findit simpler and more refreshing.
(39:18):
So I'm happy with it at the moment.
We can take, we can take advice from themas we progress to make it easier for them.
Yeah, I think it opens up thisspace for that thugg mind.
Shared mutual experience.
So to finalize things, after theconference, the president contacted
(39:45):
me to say that our presentationwas one of the highlights of the
conference, and that was reiterated bya couple of other board members also.
And they also contacted to saythat they were putting us forward
(40:07):
in, in ways to try and engage.
Uh, there were also people who just wantedto speak quietly about a family member
or themselves, and I was happy as anadvocate to give them that personal time.
One thing did come up immediately,and that was an invitation to
(40:33):
present at the PBS main conference,positive behavioral support.
So one is the main conference fora B, A, and the second one is the
main conference for PBS in the uk.
And.
(40:54):
Unfortunately, we are expected togo there and subsidize the costs.
We are expected to go there even thoughthey've been, they feel they've been
quite generous with offering accommodationand access to the whole conference . If
I went to that conference, I wouldhave to take two days off from my
(41:18):
profession and I would be out of pocket.
And I have to say, having just beenoutta pocket at one conference,
I've, I've actually said to them, no,unless they cover the my losses and
make sure I'm not paying anything orthe charity isn't paying anything.
(41:41):
I can't take part in that,which is a real shame.
It's a shame for us because, youknow, it's, it's a, not only a
national conference, but it'sbeamed out internationally.
But I can't justify spending tosupport a multi-billion pound industry.
(42:05):
Your
time,
our time, your expertise, our expertiseis worth more than what's being
offered, and it's the approach whereeven though it's a good opportunity,
a great opportunity, the way theopportunity has been presented, it's.
(42:31):
The work that we've been neededand as needed for it to be
fruitful to everyone involved.
This has been an autistic associationproduction for autistic radio.
If you have comments, if you areinterested in furthering this discussion,
(42:57):
contact news at autistic radio.
Com.
Thank you so much for givingyour attention to us today.
There are so many other things thatyou could have done, and it's lovely
to see the increasing numbers ofpeople throughout the world taking
(43:20):
part in the autistic radio project.
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