June 13, 2025 • 38 mins
Adult support from Inspiring Minds Scotland
Sean and Leila co-operate to achieve legacy by creating an Authentically Informed Autistic Support Service.
Episode one available here...
Autistic-Knowledge-Development-Ep1-Adult-Support-Fund-Project
another episode including AKD
2024 04 29 Autistic-Knowledge-Development-Sean-Leila-a-Seat-at-The-Table-EP8-20240429
https://autisticknowledgedevelopment.org/
https://inspiringscotland.org.uk/fund/autistic-adult-support-fund/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jules-AutisticRadio.com (00:20):
Hello, everybody.
And thank you for finding us.
Thank you for tuning inand thank you coming back.
It's obvious to us now that wehave a loyalty amongst you, a group
of people who come to find outabout what we're saying across the
different subjects that we have.
Not everyone's going to be listeningto a podcast about ABA or behaviorism.
(00:47):
Not everybody is going to want tolisten to a podcast where we talk
about our Facebook groups and pages.
There's something for everybodythere on Autistic Radio.
Happily, I'm joined today by the guysover at, , Autistic Knowledge Development.
Sean is with us.
(01:07):
, Sean, you've been really involvedin a project recently supporting
people after their late diagnosis.
Remind us how that's gone.
Sean-Autistic-Knowledge-Development (01:16):
Yeah.
, hi Jules.
Hi Morris.
, . We've been lucky enough to getcontinuation funding for our Embrace
Autism post diagnostic adult autismsupport project, which we run in
conjunction with National AutisticSociety, Scotland, we've been able
to continue the group support, oversix weeks for an hour and a half each
(01:36):
time with a theme fairly informally.
So each group is really drivenby , who happens to be in the room
and where the conversation goes.
Different to what we did last yeartaking on feedback the kind of main
bits of feedback we got, well, yeah,this, this has been great, but what next?
So taking that feedback we've set upa closed and heavily moderated Facebook
(02:00):
group for Embrace Autism, which has beenbrilliant . Developed a life of its own
and that's been great to see from thereis actually as a community, how much we
support ourselves and also to see thefriendships that are starting to form as
well, because I know in my own journeyof kind of accepting and then learning to
love being autistic, a big part of thatwas getting to know other autistic people.
Jules-AutisticRadio.com (02:27):
So this is a closed group just for
the people who've experienced.
Autistic knowledge developmentsprogram for supporting after you
realized you're diagnosed, can peoplejoin that group from the outside?
Sean-Autistic-Knowledge-Development: No, they can't. (02:40):
undefined
We kind of really, really wanted towithout sounding pretentious, to curate
a community and by making sure thateveryone that's in the group has been
through the six week support program.
It means that everyone is.
roughly more or less in the same placeand is in the same head space and has had
(03:01):
the same opportunity to explore what itis to be autistic over six weeks with a
group of 10 or 12 other autistic people.
When you finish the six weeks ofsupport, you get a email from one of
my colleagues with information packand slides and notes from the groups.
And you also get an invitationto join the Facebook group.
(03:23):
, I really struggle with social media thatthe whole, the whole idea of even going
on Facebook was making my, my palmssweat when I was thinking about it.
But actually I've just joined.
Facebook specifically, just,just to be a part of this group.
It is it's a quiet corner of the internet.
And one of the reasons why we've spentquite a lot of time and money getting
(03:45):
really good autistic moderators for thisis to make sure that we are different
There's no trauma dumping on there.
It's not kind of whitewashing theexperience of what it is to be autistic,
but it's exploring in a positive way.
Both the kind of positivesand the struggles as well.
So everything from, from sharing hacksof how do you navigate going on holiday?
(04:08):
Kind of, how do you navigate publictransport to kind of stuff that's
just more lighthearted, like aboutsharing people's favorite books,
favorite music, favorite films.
Jules-AutisticRadio.com (04:20):
It's got more to it than just exploring autism,
though that's in the backgroundalso, it's also a social space
where people can just be unnoticed.
Yeah, a hundred
Sean-Autistic-Knowledge-Development: percent. (04:30):
undefined
It's, it's been drivenby who joins the group.
Smaller, obvious groupsof potential friends.
So people that might be intogaming, there's already a smaller
conversation starting there.
There was a really interestingthread that emerged . Amongst the
dog lovers that are in the group.
So we're just trying to provide asafe space where people can just
(04:54):
dip in and out and can just observe.
Or if people want to, that they canactually start to make meaningful
relationships and potentiallyfriendships with other autistic people.
Jules-AutisticRadio.com: Yeah, I get the sense of that. (05:05):
undefined
People have tried these thingsbefore, they've tried various
versions of forums and AspieVillage and all kinds of things to,
they always go through phasesof being more used or less used.
There's something quite interesting aboutyour setup in that the people not only
(05:28):
have the shared interest of autism, butThey have also been primed with this
kind of ladybird book version of autism.
Some places to start from.
Here are some ideas, here are somewords, we're going to talk about them.
And then everybody's on the same page kindof thing when they come to your group.
(05:48):
That's a very interesting thing to me.
, that's
Sean-Autistic-Knowledge-Development: We felt it was really important that (05:52):
undefined
people had a sort of kindred spiritmentality that joined a continuation
of people who enjoyed what they gotfrom the group to have a version that's
a bit more organic and just allowsconversations to happen more naturally.
Rather than structuredformat of six themed weeks.
(06:13):
This is more designed to be a jumpingoff point for people to start to
build their own autistic communities.
Upfront at the start that atthe moment, we only have funding
to run it until May next year.
We've got some interesting news aboutmaybe it being able to continue
further, but we've been very clearthat actually this is just a tool to
(06:34):
start forming your own networks andfriendships we're hoping that people
will just see this as a another toolfor meeting more autistic people.
There's a degree of safety checking.
We know who everyone is.
We know that they're going to be nice andpolite with other people, which I know
sounds like a small point, but it's ahuge jumping off point if your experience
(06:55):
of socializing has been negative, orif you naturally are quite distrusting.
of other human beings.
We've done our best to try and get thebalance between it being engineered to
be a safe and welcoming space, but alsofor it to be whatever the autistic people
that are in the online room wanted to be
Maurice-ELAS-Autistic-Group (07:14):
if it's, um, got a pattern of what it does,
a rolling pattern, I mean, that'sa, an online group doesn't have the.
Problem of times, specifically thetimes to do things out like a, doesn't
sound like there's a live chat element,but still a way that it keeps going.
Kind of something already started.
There's a potential answer tothe cliff edge of folks that
(07:35):
keep doing it, having started it.
And I have some answers to thesecliff edges of when things end.
The
dauntingness of trying toinitiate something new to start.
Some of them would always be heavy on me.
I can't initiate one off thingssocially, I need to follow.
So cycles that are ongoing so thatyou're never having to each time get
(08:01):
other folks to agree and use it to.
Do the thing that's conveniencefor them, et cetera.
Sean-Autistic-Knowledge-Development: Yeah, Morris, that's a really good point. (08:10):
undefined
And it's something that we gaveconsideration to because we were
very conscious, even for how my ownfeelings are about social media,
about not kind of creating overwhelm.
So we have very specific.
Points of the week where we sharethat there's going to be activity.
(08:30):
We have live comments turnedoff for most of the week to
allow moderators to do the job.
And also to create a bunch of minievents we've got some sections
which include, ask me anything.
We have a series of yes or no questions.
Quite light hearted, that's an easy way.
(08:52):
If someone doesn't know what topost to start to join into the
conversation , on the thread.
We've just started doing a series ofFacebook lives, to showcase that being
autistic doesn't have a single voice.
Doesn't have a single look, can andis any and all of us to basically
(09:15):
try and dispel some of the myths andstereotypes of what it is to be autistic.
The first person that we hadon was a actor and musician.
Tom Ury from Paisley in Glasgow.
He was later in life diagnosed autistic,someone who people might recognize
from things like Still Game and RiverCity well known programs on TV.
(09:37):
When Tom came on was he's a really downto earth, Honest, likable, engaging,
funny person, but very, very real.
It was very helpful for people inthe group to see , they've had this
amazing career in TV and music, butactually has had very real struggles.
(09:57):
In the last few years that he'srealized that he's autistic, but
actually life starting to make sense.
We really want the Facebook groupto actually to not only help break
down stereotypes that we mightthink society has, but also to break
down our own individual stereotypesof what it is to be autistic.
And we've had a brilliant womancalled Katie Forbes, who set up an
(10:22):
organization called Autistic Flare,and she works also heavily in media.
She helped out loads with the marketingfor the videos for the first phase.
On Instagram.
She's got thousands of followers, atAutistic Flare and she gives really,
great everyday advice of what it is to beautistic for her and, and how she's found
(10:47):
life navigating as an autistic person.
Jules-AutisticRadio.com: That sounds great. (10:52):
undefined
That sounds just the sort of followup people who have been asked to look
at their own autism with support.
In the short groups that have beenoffered by various organizations,
it looks as though what you'vedone is the full package.
(11:17):
You've followed people up and madethere a possibility to be followed up.
We've had some thoughts about thisand we've tried to approach it in a
slightly different way to yourselves.
We're going to create, aregular time every Sunday.
(11:37):
Where people who are looking forsomething after their late diagnosis
groups to join with others and fulfillsome of the benefits that you've
been describing as a radio, as anaudio only, as a text and voice.
(11:58):
Enterprise, where in the same wayyou've been talking about people can
discuss their own ideas, but then I'llhear other people discussing them.
So that's something we're putting forwardas an addition to what you're doing.
Sean-Autistic-Knowledge-Development: I love the sound of that very (12:12):
undefined
into us as a community, being ableto hold up mirrors to ourselves.
A kind of group situation,that's just entirely.
Autistic people, I personally alwayslearn as much about myself as I do
about what it is to be autistic.
And I also find these moments to beenergizing for the rest of the week.
(12:39):
Opportunities where you canactually, first of all, feel normal
by, there are very few points inlife where as an autistic person,
you can actually sit and say.
, I am what is deemed to be normal,whatever that is in this room, on
this website, on this radio station.
So yeah, I think that's brilliant.
(13:01):
And I just think thereneeds to be more of it.
Jules-AutisticRadio.com (13:06):
Yeah, I agree.
Everybody tries their own differentflavor on this and different flavors
meet different parts of people's needs.
And potentially.
It is possible for people to finddifferent versions of support.
(13:27):
And use them as a portfolio forthemselves, somebody who's late
diagnosed might be already in yourgroup, but they're also looking out to
more Facebook groups and that makes adifference their lives, or they might
be involved in an audio project as well.
It's, it's giving people optionsand opportunities, isn't it?
Sean-Autistic-Knowledge-Development: Oh, a hundred percent . If (13:50):
undefined
you've met one autistic person,you've met one autistic person.
And whilst the commonality thatwe'll all have here is, is that we're
autistic, we're all unique individuals.
Support doesn't necessarily have to say.
Support above it.
Support can be tuning in everyweek, religiously, on a Sunday.
(14:13):
To your show, it could be when you'vehad a bad week that you tune into it, or
when you need topping up, you might'vehad a bad day that you tune into it.
And one of the things that, thatwe're very conscious of is Scotland's
better than a lot of countries forautism support, but it's still a
long way from what there should befor all autistic people everywhere.
(14:38):
And I always take a pragmatic approachI would rather think, right, okay,
well, let's work what we've got infront of us and let's make the best
out of what's currently available.
You phrased this as potentially beingpart of someone's toolkit, I think it's
an important thing for people to realize.
Because part of your toolkit mightbe even going and spending time with
your, uh, animals with your cat mightbe going out with your dog to spend
(15:03):
20 minutes in your local woods, inyour local park, by your local beach,
and all of this stuff is really,really important for both your mental
wellbeing and your physical wellbeing.
Maintaining.
Mental and physical wellnessas an autistic person.
I personally believe that we're notdestined to constantly be in the midst of
(15:24):
clinical anxiety and clinical depression,but we need to engineer around us a life
and some support structures that meansthose things are less likely to happen.
Those things are less likely to bepermanent features of our lives.
Jules-AutisticRadio.com (15:41):
It's a bit of a surprise to me when you say
that previously Autistic KnowledgeDevelopment had feedback about this
cliff edge as Morris describes it.
You get some support for a littlewhile and then suddenly you're bereft
(16:02):
and you have, as an organization, as anautistic professional organization, Have
taken that piece of information, run withit, and created something when you've
come back to a similar scheme this year.
But I haven't seen that being producedby all the other beneficiaries of the
(16:23):
money that you got to seed your initialscheme, your initial support package.
Why haven't other beneficiariesdone the same as you?
Sean-Autistic-Knowledge-Development: There's, there's a couple of levels (16:37):
undefined
to answer that your autistic radiocolleagues making the observation
that myself and Lila operate.
, our organization in a very autisticway and Lila and I have both owned
that we like to be over everything.
So we'd like to be involvedin the design and we like to
be involved in the delivery.
(16:57):
And that's a point I'm, I'm.
Maybe come on to later if we havetime today, but I think the difference
between why we've done something.
Being kind of autistic and owning beingautistic is we actually want feedback.
And I don't know if any, anyonelistening has ever designed anything.
Feedback.
(17:17):
That's not always a hundredpercent positive is actually
the most useful feedback becauseit gives you something to do.
It gives you something to change.
It gives you something to engineer.
Yeah.
And whilst it was positive feedbacksaying, yeah, this was great, but now what
next, that, that really got us thinking.
And there was a few of the groupsthat we spoke to at the end of it
said, obviously working with dataprotection, is there a way where we
(17:41):
can check who's interested in our groupand can we set up a WhatsApp group?
One of the real differences . Ifsomeone asks me for feedback, I give
them feedback nine out of 10 times.
They don't want to hear the feedback.
And I think that's the differencebetween us as an organization
we know we're not perfect.
We try to do the best job that wecan, and we know that everything
(18:02):
is always a work in progress.
We could have sat back because we hadthe first phase externally evaluated,
that's going to be published laterthis year at an event in Holyrood and
we could have sat back and said, yeah,well done, pats on the back, everyone.
But There's always more that you can do.
And until we live in a world where the NHSisn't broken and social services, isn't
(18:23):
broken, it's my belief that anyone that'sworking in and around the third sector.
So that means social enterprises,charities, voluntary groups.
There's always more that wecan do to help our communities.
Jules-AutisticRadio.com: I'd like to go back in time. (18:38):
undefined
I could say this could be, thiscould have been completely different.
Hundreds of thousands of pounds havebeen put into a late diagnosis thrust and
the results have been that the majorityof the organizations have ignored the
knowledge that was available right at thebeginning, which was that autistic people
(19:03):
said it's okay to start us off with theseflashcard based introductions to autism.
In groups over a period of weeks, butwhat we actually need is networking and
something a bit longer term to happenso that we've got something after it and
(19:24):
all the organizations knew that rightat the beginning, because they've had
that feedback from the previous yearand then when the money was handed out.
There were really specific guidelinesgiven about taking into account autistic
people, giving them a seat at the tableand making sure that what was designed
this time took into account those.
(19:46):
And the biggest thing they couldhave done was what you did,
have some kind of follow up.
All the information was there, butthey didn't do that, even though the
autistic people were saying to themthat that was the most important
part of what they were doing.
Why didn't they do that?
Sean-Autistic-Knowledge-Development: I think it's an interesting one. (20:05):
undefined
And I can only talk about myselfand Lila's experience and our wider
kind of team of colleagues here.
And I think that comes down to confidenceand inside I am laughing my head off
at myself because for someone thatmight've seen confidence in various
points in my life, particularlyvarious points in my career.
(20:26):
I, I really lack confidence,but actually I'm talking about
confidence in what we do.
Now, myself and Lilaare two autistic people.
We have a wider team, which includesmore autistic people, but we're still
only a group of autistic people.
So everything that we do is.
(20:46):
Developed, tested, co developed, testedagain with our fellow autistic community.
And when good ideas, when there's aclear demand for something emerges
from our autistic community,we listen, we adapt, we change.
Now that takes a degree of confidencein who you are and what you're doing.
(21:08):
To be able to say, we're not going toget it 100 percent right all the time.
We're trialing out something thatwe think works from learning, from
evidence that we have elsewhere,doing something similar, but this
is something new that we're doing.
Not accepting the status quo, lookingat the current state of the nation of
what support is, and more importantly,what support isn't there for autistic
(21:32):
people and listening to peopleand taking the autistic community.
With us as much as we can, becauseagain, the autistic community is
as disparate as any community thatthere is, but listening to the voices
directly, we support and in particular,unpicking any negative feedback.
(21:55):
rather than being kind ofhuffy about it, we've said,
right, okay, like, great, cool.
This is something that we can work with.
Let's see what we cando kind of better here.
Is there something that we can change?
Our group support can'tbe everything to anyone.
It's very short.
There's only so much you can coverin six, one and a half hour sessions.
(22:16):
But it's a launch pad and as a launchpad, we've got evidence that it works
particularly well, but what we're verykeen to do, and again, I hope some of
you listeners pick up the baton hereis if you think something's missing,
if you think something needs to happen.
Start something, start a conversation.
And if someone's got an idea.
(22:38):
To help do something for a bit of theautistic community that either we're
not serving or we could do better with,then great, please come step up and
do it because the autistic communityneeds more autistic people that willing
to try and do things differently.
Jules-AutisticRadio.com: Compressing your answer, (22:58):
undefined
the answer is because the existingcommunity of professionals were not
brave enough to listen to some of thenegatives and then turn them around and
make them pointers to growth and challengeand learning and create a change.
(23:22):
They were not brave enough.
And secondly, they were lazy.
Because they had an amount of money comingin, they could see that if they put this
out, this product out, that would fulfillthe criteria as far as they could see.
They didn't need to push it any further.
(23:42):
They didn't need to be asimaginative of you as you are.
They could do what they normallydo, get paid for it and walk home.
That's my summary of what, why otherorganizations didn't do what you did.
Maurice-ELAS-Autistic-Group (23:58):
Well, it's daunting for them, I mean,
without seeing that there's anexample where it had already worked.
And they will see an example now ifthey're listening to you, but that's
what happens when someone goes first.
I mean, I, I'm not brave enough to takehugely embarrassing shows for risks that
I've, I've not seen evidence will work.
(24:18):
So I don't want to.
Blame any, uh, professionals for thesame failing, uh, I think that, uh,
having somewhere to start on whatto do and having seen an example
that it works, there's no tippingpoint difference, or should be.
Sean-Autistic-Knowledge-Development (24:36):
I think that was a really nice point, too.
interject there and there's anelement of bravery we have at
AKD, which is driven by passion.
It's driven by something that'squite hard to find words for.
Uh, it's not driven by money.
(24:56):
It's not driven by power.
It's not driven by career aspirations.
It's driven by, and I'm going tosound naive here, but actually
wanting to change the world, not in.
An egotistical way, but the amountof times I've had conversations
with colleagues who are autistic andprofessionals, and also colleagues who
(25:16):
aren't autistic and are professionals,but who get it about what it's like to
either self diagnose, self identify thatyou're autistic to get a formal diagnosis,
particularly a formal diagnosis.
And if you're lucky to jump through the.
Hoops to get to the process to waitlong enough to get to it either, or to
(25:38):
have enough money to have been able toafford to have done it privately at the
end of it, you kind of left with a bitof paper and it's good luck off you go.
. You can't change your own past, but whatyou can do is maybe help other people that
have been in a similar situation, maybe tohave a slightly easier time than you did,
or maybe to be able to find some positiveinformation on what it is to be autistic
(26:03):
a bit more quickly than you did yourself.
It's been really, really cool inthe last few months that we've
actually met a reasonable number.
Of different organizations.
Aren't autistic led that believe theyshould have more autistic professionals,
not just people that are there becausethey're autistic, but people who are
(26:25):
professionals who also happen to beautistic involved in their organizations.
Definitely wanting to increase the balanceof these people to be closer to the
majority, if not the majority in theirorganizations and starting to realize that
actually good intentions aren't enough.
You need an evidence base.
(26:47):
You need proof that this works andyou need the community that you're
attempting to serve to actually feelthat you are serving them and that
you're involving them and that notonly are you involving them, but you're
providing opportunities for them to lead.
Jules-AutisticRadio.com (27:04):
I think it's a renaissance of tokenism.
They are intelligent enough asa professional group to realize
they're not going to get away with.
The original tokenism and theyneed to reframe it, rechange it
so that they still get funded.
(27:26):
It's usually follow the money.
I think these organizations perceive thatif they do not demonstrate that they have
autistic people integrated into theirstructures as professionals, then they
will Not be getting money in future.
Sean-Autistic-Knowledge-Development (27:50):
I think there's some truth in that, but
I also think that there are some peoplewho genuine allies, and I'll give you
an example that I think there is alot of truth to what you said there,
I gave a talk a few years backat Google campus called doing the
right things for the wrong reasons.
(28:10):
Lessons learned from embedding socialenterprise across the university sector.
And it was stuff at the time that I wasdoing in conjunction with HEFCE, which
is the Higher Education Funding Councilfor England, and also a big social
enterprise supporter called Unlimited.
Now it also ruffled a lot of feathers.
If you look at all societal andbusiness kind of ethical change
(28:33):
that's happened in the last 30,40 years, it's driven by money.
So very pragmatic, I'm a realist, veryaware of the world that I live in.
And for me, yeah, it would be greatif everyone was doing the right thing
because it's the right thing to do.
(28:54):
But equally, there's going tobe a whole bunch of people.
That when they realized there's a kindof financial kind of benefit, a career
benefit of doing it will get on board.
Now, I would rather people got on boardfor whatever reason than they didn't get
on board at all, because I've encounteredquite a lot of situations where when you
(29:17):
lift the veneer a bit that it is tokenism.
But actually, if you can even forceorganizations, individuals who have
been tokenistic, Into doing somethingreal, albeit it might be for completely
the wrong reasons, then that's stillpotentially an autistic professional in a
job that they might not have had in a moresenior role that they might not have had.
(29:39):
And yes, there is going to be a lot ofcynical kind of maneuvering , but I would
much rather that digging in of the heelsthis is the way that we've always done it.
. Conflating number of years,working in a sector with the lived
experience of being autistic.
On top of that, then the lived experienceof being a professional and autistic.
(30:03):
So yeah, , I completely empathize,understand with your statement there.
I'd say that there are some peoplehere that are genuinely wanting
to make a difference, but again,human beings are herd animals.
And there'll be a whole bunch ofpeople that sit in the middle that
start to follow the crowds when thecrowd goes a different way as well.
(30:24):
And as long as the heading ina better direction, then I'm
ultimately okay with that,
Jules-AutisticRadio.com (30:32):
I'm quite willing to make strong statements here.
If it gives people the opportunityto put forward reasoned discussions
about why they might be wrong.
That's kind of the point of me here.
What would indicate to me
that there has been a large change.
(30:54):
Would be when I see
people who have
created the status quo being thepeople who get retired, when I see.
Upcoming autistic people,autistic professionals, not
(31:17):
being added, but replacing thepeople who were already there.
That's when I will believe that thereis a, a true change happening and it
isn't just another wave of tokenism,a wave of neurodiversity washing.
(31:38):
We have a great opportunity atthe moment for structural change.
That opportunity is thecutbacks that are being made.
My fear is that the cutbacks are goingto take things back to the bone, back
to the skeleton, and the skeleton isthe rotten thing, and all the flesh
(32:01):
that's going to be lost might be thereaching out to autistic groups, might
be the inclusion of autistic people.
It should be the other way around.
It should be that the new and progressivethings are the things that are kept.
And the old crumbling arthriticskeleton of the previous
(32:22):
decades needs to disappear.
Sean-Autistic-Knowledge-Development: Well, Jules, Maurice, if I hadn't (32:28):
undefined
been muted then you'd have heardme laugh out loud at points there
you were striking a chord there.
I was at a meeting with Marie Todd, who'sthe minister in charge of everything
health and social care in Scotland.
She was there to share her thoughts aboutthe Revised strategy for self directed
(32:53):
support Scotland, which is the way allsocial care is delivered in Scotland.
And she raised a really interestingpoint, about how the most important.
Kind of factor for getting all thesechanges with self directed support to
happen and also to get self directedsupport to actually work in the way
it was intended , was about culture.
So I asked a question and Isaid, Oh, that's great to hear.
(33:14):
You genuinely seem passionate and enthusedabout this, which is great to hear from
any politician, but when you're talkingabout culture, Everyone knows ultimately
culture means people and your point ofit's actually the people that needs to
change in a lot of these organizations,because our experience as autistic
knowledge development, we've worked withmost of the big names, some of them we
(33:35):
still work with, some of them we don't.
And every single instance, it's downto culture, which is down to people.
Ultimately, you've got people that getit and want to go in a direction, or
you've got people that don't get it anddon't want to go in a certain direction.
Some interesting points.
I got a 10 minute answer,she basically wanted.
Social workers who were burnt out,who had cared too much, who were
(33:59):
too involved in the job to getreinvigorated and re energized.
And for those to be the people, as wellas people who have lived experience, as
well as people who will be both, kindof, professionals and lived experience.
To be running things.
And that was her main observation as towhy this hasn't worked in the past and why
(34:24):
it will work or won't work in the future.
Which is down to culture, which isdown to people and Jules, I completely
agree with you there that there's areckoning coming in the autism sector.
First of all, it's, it'sgoing to be harder to keep
organizations going full stop.
As an organization, AKD, we're doing ourvery best to become part of the furniture.
(34:49):
Of this sector, which is why, again,we're very much, everything we do is
evidence based we're very much intotrying to be helpful outside of our own
organization, which might not necessarilyseem like good sense, but actually
we believe that creating a healthy.
Community of autism support organizationsis the way to have a healthy
(35:15):
individual autism support organization.
So yeah, kind of as much as I like to kindof try and tread the middle ground with
stuff, , there is a culture change thatneeds to happen, and I do agree with you
that actually in some cases, people willneed to change for the culture to change.
Jules-AutisticRadio.com (35:38):
People will need to change for the culture to change.
That's a very good conclusionfor our conversation today with
autistic knowledge development.
We can go so far in explaining autismto the professionals in its modern
(36:00):
way, its modern setting, how weexperience it with our lived experience.
And those people, they can be allies,they can change, they can understand
and accept and implement that knowledge.
But, ultimately, the change that reallyneeds to happen in most of the cases is
(36:24):
people need to move on and retire now.
People need to move on, stand out of theway, and allow autistic professionals
like Sean, like Lila, like so many otherpeople we meet here on Autistic Radio.
We need them to betaking the lead in this.
(36:46):
Moving from tokenism, moving fromstructures that are set to Use
autistic people as a kind of rawmaterial for a service to sell
and move it much closer to thelived experience of autistic people.
(37:06):
Thank you so much for describingthese things to us today, Sean, and
we'll be, we'll be back with youhearing about everything that you
haven't managed to tell us about,about what's going on with autistic
knowledge development at the moment.
Sean-Autistic-Knowledge-Development: That's brilliant. (37:21):
undefined
Thank you.
And thank you for listening, everyone.
I'll, uh, no doubt catch up again soon.
Hello, everybody.
And thank you for finding us.
Thank you for tuning inand thank you coming back.
It's obvious to us now that wehave a loyalty amongst you, a group
of people who come to find outabout what we're saying across the
different subjects that we have.
Not everyone's going to be listeningto a podcast about ABA or behaviorism.
(00:47):
Not everybody is going to want tolisten to a podcast where we talk
about our Facebook groups and pages.
There's something for everybodythere on Autistic Radio.
Happily, I'm joined today by the guysover at, , Autistic Knowledge Development.
Sean is with us.
(01:07):
, Sean, you've been really involvedin a project recently supporting
people after their late diagnosis.
Remind us how that's gone.
Sean-Autistic-Knowledge-Development (01:16):
Yeah.
, hi Jules.
Hi Morris.
, . We've been lucky enough to getcontinuation funding for our Embrace
Autism post diagnostic adult autismsupport project, which we run in
conjunction with National AutisticSociety, Scotland, we've been able
to continue the group support, oversix weeks for an hour and a half each
(01:36):
time with a theme fairly informally.
So each group is really drivenby , who happens to be in the room
and where the conversation goes.
Different to what we did last yeartaking on feedback the kind of main
bits of feedback we got, well, yeah,this, this has been great, but what next?
So taking that feedback we've set upa closed and heavily moderated Facebook
(02:00):
group for Embrace Autism, which has beenbrilliant . Developed a life of its own
and that's been great to see from thereis actually as a community, how much we
support ourselves and also to see thefriendships that are starting to form as
well, because I know in my own journeyof kind of accepting and then learning to
love being autistic, a big part of thatwas getting to know other autistic people.
Jules-AutisticRadio.com (02:27):
So this is a closed group just for
the people who've experienced.
Autistic knowledge developmentsprogram for supporting after you
realized you're diagnosed, can peoplejoin that group from the outside?
Sean-Autistic-Knowledge-Development: No, they can't. (02:40):
undefined
We kind of really, really wanted towithout sounding pretentious, to curate
a community and by making sure thateveryone that's in the group has been
through the six week support program.
It means that everyone is.
roughly more or less in the same placeand is in the same head space and has had
(03:01):
the same opportunity to explore what itis to be autistic over six weeks with a
group of 10 or 12 other autistic people.
When you finish the six weeks ofsupport, you get a email from one of
my colleagues with information packand slides and notes from the groups.
And you also get an invitationto join the Facebook group.
(03:23):
, I really struggle with social media thatthe whole, the whole idea of even going
on Facebook was making my, my palmssweat when I was thinking about it.
But actually I've just joined.
Facebook specifically, just,just to be a part of this group.
It is it's a quiet corner of the internet.
And one of the reasons why we've spentquite a lot of time and money getting
(03:45):
really good autistic moderators for thisis to make sure that we are different
There's no trauma dumping on there.
It's not kind of whitewashing theexperience of what it is to be autistic,
but it's exploring in a positive way.
Both the kind of positivesand the struggles as well.
So everything from, from sharing hacksof how do you navigate going on holiday?
(04:08):
Kind of, how do you navigate publictransport to kind of stuff that's
just more lighthearted, like aboutsharing people's favorite books,
favorite music, favorite films.
Jules-AutisticRadio.com (04:20):
It's got more to it than just exploring autism,
though that's in the backgroundalso, it's also a social space
where people can just be unnoticed.
Yeah, a hundred
Sean-Autistic-Knowledge-Development: percent. (04:30):
undefined
It's, it's been drivenby who joins the group.
Smaller, obvious groupsof potential friends.
So people that might be intogaming, there's already a smaller
conversation starting there.
There was a really interestingthread that emerged . Amongst the
dog lovers that are in the group.
So we're just trying to provide asafe space where people can just
(04:54):
dip in and out and can just observe.
Or if people want to, that they canactually start to make meaningful
relationships and potentiallyfriendships with other autistic people.
Jules-AutisticRadio.com: Yeah, I get the sense of that. (05:05):
undefined
People have tried these thingsbefore, they've tried various
versions of forums and AspieVillage and all kinds of things to,
they always go through phasesof being more used or less used.
There's something quite interesting aboutyour setup in that the people not only
(05:28):
have the shared interest of autism, butThey have also been primed with this
kind of ladybird book version of autism.
Some places to start from.
Here are some ideas, here are somewords, we're going to talk about them.
And then everybody's on the same page kindof thing when they come to your group.
(05:48):
That's a very interesting thing to me.
, that's
Sean-Autistic-Knowledge-Development: We felt it was really important that (05:52):
undefined
people had a sort of kindred spiritmentality that joined a continuation
of people who enjoyed what they gotfrom the group to have a version that's
a bit more organic and just allowsconversations to happen more naturally.
Rather than structuredformat of six themed weeks.
(06:13):
This is more designed to be a jumpingoff point for people to start to
build their own autistic communities.
Upfront at the start that atthe moment, we only have funding
to run it until May next year.
We've got some interesting news aboutmaybe it being able to continue
further, but we've been very clearthat actually this is just a tool to
(06:34):
start forming your own networks andfriendships we're hoping that people
will just see this as a another toolfor meeting more autistic people.
There's a degree of safety checking.
We know who everyone is.
We know that they're going to be nice andpolite with other people, which I know
sounds like a small point, but it's ahuge jumping off point if your experience
(06:55):
of socializing has been negative, orif you naturally are quite distrusting.
of other human beings.
We've done our best to try and get thebalance between it being engineered to
be a safe and welcoming space, but alsofor it to be whatever the autistic people
that are in the online room wanted to be
Maurice-ELAS-Autistic-Group (07:14):
if it's, um, got a pattern of what it does,
a rolling pattern, I mean, that'sa, an online group doesn't have the.
Problem of times, specifically thetimes to do things out like a, doesn't
sound like there's a live chat element,but still a way that it keeps going.
Kind of something already started.
There's a potential answer tothe cliff edge of folks that
(07:35):
keep doing it, having started it.
And I have some answers to thesecliff edges of when things end.
The
dauntingness of trying toinitiate something new to start.
Some of them would always be heavy on me.
I can't initiate one off thingssocially, I need to follow.
So cycles that are ongoing so thatyou're never having to each time get
(08:01):
other folks to agree and use it to.
Do the thing that's conveniencefor them, et cetera.
Sean-Autistic-Knowledge-Development: Yeah, Morris, that's a really good point. (08:10):
undefined
And it's something that we gaveconsideration to because we were
very conscious, even for how my ownfeelings are about social media,
about not kind of creating overwhelm.
So we have very specific.
Points of the week where we sharethat there's going to be activity.
(08:30):
We have live comments turnedoff for most of the week to
allow moderators to do the job.
And also to create a bunch of minievents we've got some sections
which include, ask me anything.
We have a series of yes or no questions.
Quite light hearted, that's an easy way.
(08:52):
If someone doesn't know what topost to start to join into the
conversation , on the thread.
We've just started doing a series ofFacebook lives, to showcase that being
autistic doesn't have a single voice.
Doesn't have a single look, can andis any and all of us to basically
(09:15):
try and dispel some of the myths andstereotypes of what it is to be autistic.
The first person that we hadon was a actor and musician.
Tom Ury from Paisley in Glasgow.
He was later in life diagnosed autistic,someone who people might recognize
from things like Still Game and RiverCity well known programs on TV.
(09:37):
When Tom came on was he's a really downto earth, Honest, likable, engaging,
funny person, but very, very real.
It was very helpful for people inthe group to see , they've had this
amazing career in TV and music, butactually has had very real struggles.
(09:57):
In the last few years that he'srealized that he's autistic, but
actually life starting to make sense.
We really want the Facebook groupto actually to not only help break
down stereotypes that we mightthink society has, but also to break
down our own individual stereotypesof what it is to be autistic.
And we've had a brilliant womancalled Katie Forbes, who set up an
(10:22):
organization called Autistic Flare,and she works also heavily in media.
She helped out loads with the marketingfor the videos for the first phase.
On Instagram.
She's got thousands of followers, atAutistic Flare and she gives really,
great everyday advice of what it is to beautistic for her and, and how she's found
(10:47):
life navigating as an autistic person.
Jules-AutisticRadio.com: That sounds great. (10:52):
undefined
That sounds just the sort of followup people who have been asked to look
at their own autism with support.
In the short groups that have beenoffered by various organizations,
it looks as though what you'vedone is the full package.
(11:17):
You've followed people up and madethere a possibility to be followed up.
We've had some thoughts about thisand we've tried to approach it in a
slightly different way to yourselves.
We're going to create, aregular time every Sunday.
(11:37):
Where people who are looking forsomething after their late diagnosis
groups to join with others and fulfillsome of the benefits that you've
been describing as a radio, as anaudio only, as a text and voice.
(11:58):
Enterprise, where in the same wayyou've been talking about people can
discuss their own ideas, but then I'llhear other people discussing them.
So that's something we're putting forwardas an addition to what you're doing.
Sean-Autistic-Knowledge-Development: I love the sound of that very (12:12):
undefined
into us as a community, being ableto hold up mirrors to ourselves.
A kind of group situation,that's just entirely.
Autistic people, I personally alwayslearn as much about myself as I do
about what it is to be autistic.
And I also find these moments to beenergizing for the rest of the week.
(12:39):
Opportunities where you canactually, first of all, feel normal
by, there are very few points inlife where as an autistic person,
you can actually sit and say.
, I am what is deemed to be normal,whatever that is in this room, on
this website, on this radio station.
So yeah, I think that's brilliant.
(13:01):
And I just think thereneeds to be more of it.
Jules-AutisticRadio.com (13:06):
Yeah, I agree.
Everybody tries their own differentflavor on this and different flavors
meet different parts of people's needs.
And potentially.
It is possible for people to finddifferent versions of support.
(13:27):
And use them as a portfolio forthemselves, somebody who's late
diagnosed might be already in yourgroup, but they're also looking out to
more Facebook groups and that makes adifference their lives, or they might
be involved in an audio project as well.
It's, it's giving people optionsand opportunities, isn't it?
Sean-Autistic-Knowledge-Development: Oh, a hundred percent . If (13:50):
undefined
you've met one autistic person,you've met one autistic person.
And whilst the commonality thatwe'll all have here is, is that we're
autistic, we're all unique individuals.
Support doesn't necessarily have to say.
Support above it.
Support can be tuning in everyweek, religiously, on a Sunday.
(14:13):
To your show, it could be when you'vehad a bad week that you tune into it, or
when you need topping up, you might'vehad a bad day that you tune into it.
And one of the things that, thatwe're very conscious of is Scotland's
better than a lot of countries forautism support, but it's still a
long way from what there should befor all autistic people everywhere.
(14:38):
And I always take a pragmatic approachI would rather think, right, okay,
well, let's work what we've got infront of us and let's make the best
out of what's currently available.
You phrased this as potentially beingpart of someone's toolkit, I think it's
an important thing for people to realize.
Because part of your toolkit mightbe even going and spending time with
your, uh, animals with your cat mightbe going out with your dog to spend
(15:03):
20 minutes in your local woods, inyour local park, by your local beach,
and all of this stuff is really,really important for both your mental
wellbeing and your physical wellbeing.
Maintaining.
Mental and physical wellnessas an autistic person.
I personally believe that we're notdestined to constantly be in the midst of
(15:24):
clinical anxiety and clinical depression,but we need to engineer around us a life
and some support structures that meansthose things are less likely to happen.
Those things are less likely to bepermanent features of our lives.
Jules-AutisticRadio.com (15:41):
It's a bit of a surprise to me when you say
that previously Autistic KnowledgeDevelopment had feedback about this
cliff edge as Morris describes it.
You get some support for a littlewhile and then suddenly you're bereft
(16:02):
and you have, as an organization, as anautistic professional organization, Have
taken that piece of information, run withit, and created something when you've
come back to a similar scheme this year.
But I haven't seen that being producedby all the other beneficiaries of the
(16:23):
money that you got to seed your initialscheme, your initial support package.
Why haven't other beneficiariesdone the same as you?
Sean-Autistic-Knowledge-Development: There's, there's a couple of levels (16:37):
undefined
to answer that your autistic radiocolleagues making the observation
that myself and Lila operate.
, our organization in a very autisticway and Lila and I have both owned
that we like to be over everything.
So we'd like to be involvedin the design and we like to
be involved in the delivery.
(16:57):
And that's a point I'm, I'm.
Maybe come on to later if we havetime today, but I think the difference
between why we've done something.
Being kind of autistic and owning beingautistic is we actually want feedback.
And I don't know if any, anyonelistening has ever designed anything.
Feedback.
(17:17):
That's not always a hundredpercent positive is actually
the most useful feedback becauseit gives you something to do.
It gives you something to change.
It gives you something to engineer.
Yeah.
And whilst it was positive feedbacksaying, yeah, this was great, but now what
next, that, that really got us thinking.
And there was a few of the groupsthat we spoke to at the end of it
said, obviously working with dataprotection, is there a way where we
(17:41):
can check who's interested in our groupand can we set up a WhatsApp group?
One of the real differences . Ifsomeone asks me for feedback, I give
them feedback nine out of 10 times.
They don't want to hear the feedback.
And I think that's the differencebetween us as an organization
we know we're not perfect.
We try to do the best job that wecan, and we know that everything
(18:02):
is always a work in progress.
We could have sat back because we hadthe first phase externally evaluated,
that's going to be published laterthis year at an event in Holyrood and
we could have sat back and said, yeah,well done, pats on the back, everyone.
But There's always more that you can do.
And until we live in a world where the NHSisn't broken and social services, isn't
(18:23):
broken, it's my belief that anyone that'sworking in and around the third sector.
So that means social enterprises,charities, voluntary groups.
There's always more that wecan do to help our communities.
Jules-AutisticRadio.com: I'd like to go back in time. (18:38):
undefined
I could say this could be, thiscould have been completely different.
Hundreds of thousands of pounds havebeen put into a late diagnosis thrust and
the results have been that the majorityof the organizations have ignored the
knowledge that was available right at thebeginning, which was that autistic people
(19:03):
said it's okay to start us off with theseflashcard based introductions to autism.
In groups over a period of weeks, butwhat we actually need is networking and
something a bit longer term to happenso that we've got something after it and
(19:24):
all the organizations knew that rightat the beginning, because they've had
that feedback from the previous yearand then when the money was handed out.
There were really specific guidelinesgiven about taking into account autistic
people, giving them a seat at the tableand making sure that what was designed
this time took into account those.
(19:46):
And the biggest thing they couldhave done was what you did,
have some kind of follow up.
All the information was there, butthey didn't do that, even though the
autistic people were saying to themthat that was the most important
part of what they were doing.
Why didn't they do that?
Sean-Autistic-Knowledge-Development: I think it's an interesting one. (20:05):
undefined
And I can only talk about myselfand Lila's experience and our wider
kind of team of colleagues here.
And I think that comes down to confidenceand inside I am laughing my head off
at myself because for someone thatmight've seen confidence in various
points in my life, particularlyvarious points in my career.
(20:26):
I, I really lack confidence,but actually I'm talking about
confidence in what we do.
Now, myself and Lilaare two autistic people.
We have a wider team, which includesmore autistic people, but we're still
only a group of autistic people.
So everything that we do is.
(20:46):
Developed, tested, co developed, testedagain with our fellow autistic community.
And when good ideas, when there's aclear demand for something emerges
from our autistic community,we listen, we adapt, we change.
Now that takes a degree of confidencein who you are and what you're doing.
(21:08):
To be able to say, we're not going toget it 100 percent right all the time.
We're trialing out something thatwe think works from learning, from
evidence that we have elsewhere,doing something similar, but this
is something new that we're doing.
Not accepting the status quo, lookingat the current state of the nation of
what support is, and more importantly,what support isn't there for autistic
(21:32):
people and listening to peopleand taking the autistic community.
With us as much as we can, becauseagain, the autistic community is
as disparate as any community thatthere is, but listening to the voices
directly, we support and in particular,unpicking any negative feedback.
(21:55):
rather than being kind ofhuffy about it, we've said,
right, okay, like, great, cool.
This is something that we can work with.
Let's see what we cando kind of better here.
Is there something that we can change?
Our group support can'tbe everything to anyone.
It's very short.
There's only so much you can coverin six, one and a half hour sessions.
(22:16):
But it's a launch pad and as a launchpad, we've got evidence that it works
particularly well, but what we're verykeen to do, and again, I hope some of
you listeners pick up the baton hereis if you think something's missing,
if you think something needs to happen.
Start something, start a conversation.
And if someone's got an idea.
(22:38):
To help do something for a bit of theautistic community that either we're
not serving or we could do better with,then great, please come step up and
do it because the autistic communityneeds more autistic people that willing
to try and do things differently.
Jules-AutisticRadio.com: Compressing your answer, (22:58):
undefined
the answer is because the existingcommunity of professionals were not
brave enough to listen to some of thenegatives and then turn them around and
make them pointers to growth and challengeand learning and create a change.
(23:22):
They were not brave enough.
And secondly, they were lazy.
Because they had an amount of money comingin, they could see that if they put this
out, this product out, that would fulfillthe criteria as far as they could see.
They didn't need to push it any further.
(23:42):
They didn't need to be asimaginative of you as you are.
They could do what they normallydo, get paid for it and walk home.
That's my summary of what, why otherorganizations didn't do what you did.
Maurice-ELAS-Autistic-Group (23:58):
Well, it's daunting for them, I mean,
without seeing that there's anexample where it had already worked.
And they will see an example now ifthey're listening to you, but that's
what happens when someone goes first.
I mean, I, I'm not brave enough to takehugely embarrassing shows for risks that
I've, I've not seen evidence will work.
(24:18):
So I don't want to.
Blame any, uh, professionals for thesame failing, uh, I think that, uh,
having somewhere to start on whatto do and having seen an example
that it works, there's no tippingpoint difference, or should be.
Sean-Autistic-Knowledge-Development (24:36):
I think that was a really nice point, too.
interject there and there's anelement of bravery we have at
AKD, which is driven by passion.
It's driven by something that'squite hard to find words for.
Uh, it's not driven by money.
(24:56):
It's not driven by power.
It's not driven by career aspirations.
It's driven by, and I'm going tosound naive here, but actually
wanting to change the world, not in.
An egotistical way, but the amountof times I've had conversations
with colleagues who are autistic andprofessionals, and also colleagues who
(25:16):
aren't autistic and are professionals,but who get it about what it's like to
either self diagnose, self identify thatyou're autistic to get a formal diagnosis,
particularly a formal diagnosis.
And if you're lucky to jump through the.
Hoops to get to the process to waitlong enough to get to it either, or to
(25:38):
have enough money to have been able toafford to have done it privately at the
end of it, you kind of left with a bitof paper and it's good luck off you go.
. You can't change your own past, but whatyou can do is maybe help other people that
have been in a similar situation, maybe tohave a slightly easier time than you did,
or maybe to be able to find some positiveinformation on what it is to be autistic
(26:03):
a bit more quickly than you did yourself.
It's been really, really cool inthe last few months that we've
actually met a reasonable number.
Of different organizations.
Aren't autistic led that believe theyshould have more autistic professionals,
not just people that are there becausethey're autistic, but people who are
(26:25):
professionals who also happen to beautistic involved in their organizations.
Definitely wanting to increase the balanceof these people to be closer to the
majority, if not the majority in theirorganizations and starting to realize that
actually good intentions aren't enough.
You need an evidence base.
(26:47):
You need proof that this works andyou need the community that you're
attempting to serve to actually feelthat you are serving them and that
you're involving them and that notonly are you involving them, but you're
providing opportunities for them to lead.
Jules-AutisticRadio.com (27:04):
I think it's a renaissance of tokenism.
They are intelligent enough asa professional group to realize
they're not going to get away with.
The original tokenism and theyneed to reframe it, rechange it
so that they still get funded.
(27:26):
It's usually follow the money.
I think these organizations perceive thatif they do not demonstrate that they have
autistic people integrated into theirstructures as professionals, then they
will Not be getting money in future.
Sean-Autistic-Knowledge-Development (27:50):
I think there's some truth in that, but
I also think that there are some peoplewho genuine allies, and I'll give you
an example that I think there is alot of truth to what you said there,
I gave a talk a few years backat Google campus called doing the
right things for the wrong reasons.
(28:10):
Lessons learned from embedding socialenterprise across the university sector.
And it was stuff at the time that I wasdoing in conjunction with HEFCE, which
is the Higher Education Funding Councilfor England, and also a big social
enterprise supporter called Unlimited.
Now it also ruffled a lot of feathers.
If you look at all societal andbusiness kind of ethical change
(28:33):
that's happened in the last 30,40 years, it's driven by money.
So very pragmatic, I'm a realist, veryaware of the world that I live in.
And for me, yeah, it would be greatif everyone was doing the right thing
because it's the right thing to do.
(28:54):
But equally, there's going tobe a whole bunch of people.
That when they realized there's a kindof financial kind of benefit, a career
benefit of doing it will get on board.
Now, I would rather people got on boardfor whatever reason than they didn't get
on board at all, because I've encounteredquite a lot of situations where when you
(29:17):
lift the veneer a bit that it is tokenism.
But actually, if you can even forceorganizations, individuals who have
been tokenistic, Into doing somethingreal, albeit it might be for completely
the wrong reasons, then that's stillpotentially an autistic professional in a
job that they might not have had in a moresenior role that they might not have had.
(29:39):
And yes, there is going to be a lot ofcynical kind of maneuvering , but I would
much rather that digging in of the heelsthis is the way that we've always done it.
. Conflating number of years,working in a sector with the lived
experience of being autistic.
On top of that, then the lived experienceof being a professional and autistic.
(30:03):
So yeah, , I completely empathize,understand with your statement there.
I'd say that there are some peoplehere that are genuinely wanting
to make a difference, but again,human beings are herd animals.
And there'll be a whole bunch ofpeople that sit in the middle that
start to follow the crowds when thecrowd goes a different way as well.
(30:24):
And as long as the heading ina better direction, then I'm
ultimately okay with that,
Jules-AutisticRadio.com (30:32):
I'm quite willing to make strong statements here.
If it gives people the opportunityto put forward reasoned discussions
about why they might be wrong.
That's kind of the point of me here.
What would indicate to me
that there has been a large change.
(30:54):
Would be when I see
people who have
created the status quo being thepeople who get retired, when I see.
Upcoming autistic people,autistic professionals, not
(31:17):
being added, but replacing thepeople who were already there.
That's when I will believe that thereis a, a true change happening and it
isn't just another wave of tokenism,a wave of neurodiversity washing.
(31:38):
We have a great opportunity atthe moment for structural change.
That opportunity is thecutbacks that are being made.
My fear is that the cutbacks are goingto take things back to the bone, back
to the skeleton, and the skeleton isthe rotten thing, and all the flesh
(32:01):
that's going to be lost might be thereaching out to autistic groups, might
be the inclusion of autistic people.
It should be the other way around.
It should be that the new and progressivethings are the things that are kept.
And the old crumbling arthriticskeleton of the previous
(32:22):
decades needs to disappear.
Sean-Autistic-Knowledge-Development: Well, Jules, Maurice, if I hadn't (32:28):
undefined
been muted then you'd have heardme laugh out loud at points there
you were striking a chord there.
I was at a meeting with Marie Todd, who'sthe minister in charge of everything
health and social care in Scotland.
She was there to share her thoughts aboutthe Revised strategy for self directed
(32:53):
support Scotland, which is the way allsocial care is delivered in Scotland.
And she raised a really interestingpoint, about how the most important.
Kind of factor for getting all thesechanges with self directed support to
happen and also to get self directedsupport to actually work in the way
it was intended , was about culture.
So I asked a question and Isaid, Oh, that's great to hear.
(33:14):
You genuinely seem passionate and enthusedabout this, which is great to hear from
any politician, but when you're talkingabout culture, Everyone knows ultimately
culture means people and your point ofit's actually the people that needs to
change in a lot of these organizations,because our experience as autistic
knowledge development, we've worked withmost of the big names, some of them we
(33:35):
still work with, some of them we don't.
And every single instance, it's downto culture, which is down to people.
Ultimately, you've got people that getit and want to go in a direction, or
you've got people that don't get it anddon't want to go in a certain direction.
Some interesting points.
I got a 10 minute answer,she basically wanted.
Social workers who were burnt out,who had cared too much, who were
(33:59):
too involved in the job to getreinvigorated and re energized.
And for those to be the people, as wellas people who have lived experience, as
well as people who will be both, kindof, professionals and lived experience.
To be running things.
And that was her main observation as towhy this hasn't worked in the past and why
(34:24):
it will work or won't work in the future.
Which is down to culture, which isdown to people and Jules, I completely
agree with you there that there's areckoning coming in the autism sector.
First of all, it's, it'sgoing to be harder to keep
organizations going full stop.
As an organization, AKD, we're doing ourvery best to become part of the furniture.
(34:49):
Of this sector, which is why, again,we're very much, everything we do is
evidence based we're very much intotrying to be helpful outside of our own
organization, which might not necessarilyseem like good sense, but actually
we believe that creating a healthy.
Community of autism support organizationsis the way to have a healthy
(35:15):
individual autism support organization.
So yeah, kind of as much as I like to kindof try and tread the middle ground with
stuff, , there is a culture change thatneeds to happen, and I do agree with you
that actually in some cases, people willneed to change for the culture to change.
Jules-AutisticRadio.com (35:38):
People will need to change for the culture to change.
That's a very good conclusionfor our conversation today with
autistic knowledge development.
We can go so far in explaining autismto the professionals in its modern
(36:00):
way, its modern setting, how weexperience it with our lived experience.
And those people, they can be allies,they can change, they can understand
and accept and implement that knowledge.
But, ultimately, the change that reallyneeds to happen in most of the cases is
(36:24):
people need to move on and retire now.
People need to move on, stand out of theway, and allow autistic professionals
like Sean, like Lila, like so many otherpeople we meet here on Autistic Radio.
We need them to betaking the lead in this.
(36:46):
Moving from tokenism, moving fromstructures that are set to Use
autistic people as a kind of rawmaterial for a service to sell
and move it much closer to thelived experience of autistic people.
(37:06):
Thank you so much for describingthese things to us today, Sean, and
we'll be, we'll be back with youhearing about everything that you
haven't managed to tell us about,about what's going on with autistic
knowledge development at the moment.
Sean-Autistic-Knowledge-Development: That's brilliant. (37:21):
undefined
Thank you.
And thank you for listening, everyone.
I'll, uh, no doubt catch up again soon.
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