December 13, 2025 • 49 mins
Sean and Leila are Autistic Autism Professionals
Their Community Interest Company AKD Autistic Knowledge Development has developed a programme of Pre and Post Diagnostic Support.
This model is being used as an example to follow by leaders and decision makers.
Welcomed by Autistic advocates for Actually Autistic principles and also with Proven measured improved outcomes that save money its being embraced by funders and policy makers.
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Jules
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Episode Transcript
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(00:00):
We speak our words, we listen,we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
Hello, and welcome.
(00:20):
Welcome to Autistic Radio.
Jules here, speaking with Sean fromAutistic Knowledge Development.
I'm not in Sean's pocket, but I amenthusiastic about what autistic
knowledge development does.
There's some criticism sometimes withinthe autistic community when they see other
(00:42):
autistic people making a career in autism.
And I have to say, the firstthing I need to comment on
that is, who would you prefer?
Who would you prefer to be makinga career in autism other than
autistic people themselves?
So how does that feel, Sean?
(01:04):
Do you get criticized by thecommunity for being an autistic
person making money out of us?
Uh, that statement itself, I would kindof feel a little bit uncomfortable with.
But yeah, I do get criticism from, , Theautistic led community and from the non
autistic we've come along we've decidedthe current paradigm wasn't good enough.
(01:29):
, if you're going to change any situation.
Human beings generally don'tlike and are resistant to change.
And if it's radical change, people reallydon't like it and are really resistant.
That's been true of autistic thenon autistic part as far as actually
making money from the autisticcommunity, the amount of work myself
(01:50):
and my colleague, Leila have done.
Completely off our own backs the factI set Autistic Knowledge Development
up with my own money, not with grantmoney, I think goes a long way to
show the reasons why myself and mycolleagues are in this, we're in this
to change the world, . We need tokeep a roof over our heads as well.
I've devoted my full time energiesto autistic knowledge development.
(02:13):
Three years this March.
Look at what you get for every poundspent with autistic knowledge development
versus what you get for a poundspent elsewhere in the autism sector,
we are very good value for money.
Oh, I like that.
, I think you've answered that really well.
(02:33):
, It's value for money that matters nowadaysmore than anything else, isn't it?
It is, yes, there's a slightly,, obtuse, very dehumanizing way change
gets done in the public sector.
And certainly when you look atprovisions that the state, local,
(02:54):
national government have to provide.
There's a huge master spreadsheet. That tells you the cost of a
person getting sectioned per day.
That tells you the cost of someonegoing into foster care per day.
That tells you the cost of a personreceiving support for depression.
(03:15):
That tells you the costof, , supporting someone.
If they've been in mental health crisis.
Now, one of the ways where you canmake innovation become part of the
mainstream is if you can not only provethat what you do works and you can
prove how it works and you can provethat it's repeatable with different
(03:36):
people, under the same circumstances,, if you can prove that what you do.
Is cheaper than the existing support.
Where we're really banging the drums.
So our support works best when we canwork with people before they're in crisis.
And it turns into a bitof cold, hard maths.
(03:56):
Nevermind the human cost, which ishuge, but the cold, hard maths of it.
Shows it makes no financial senseto wait for autistic people to reach
crisis, nevermind the human costand everything that we're doing is a
small amount of money upfront to helppeople before they reach crisis point.
(04:17):
And then look at some of thestatistics for unemployment
in the autistic community.
Broadly for disabled people as a whole.
Just over 50 percent of us arein some form of employment.
The autistic community, that dropsto anywhere between 15 and 22
percent in any form of employment.
Now by any, that might evenmean one or two hours a week.
(04:40):
A study being done recently ofpeople in the UK receiving benefits.
Who are autistic just over 75 percentof those people would rather be
earning money and be in employment.
Coming back to the first question ofwould you rather money's going sorry.
Oh, Yardy, Yardy,
(05:02):
Yardy, numbers, numbers, numbers, Yardy,
Yardy, Yardy.
, Our listeners.
We can't be concentrating onall these numbers coming out
of you at the same time, Sean.
, let's go with concepts.
I hear what you're saying there.
I hear that it's possible tosave money by spending money,
(05:25):
and you're in good company.
When I speak to the conventional autismprofessionals out there, They talk
about early intervention with children.
Um, I have the fortunate position tobe able to be making lots of different
recordings with different people withinshort spaces of time with each other.
(05:48):
And I was talking to one of the moreradical professionals, , yesterday,
and they were making this point
early intervention or changes rightat the beginning, save so many.
, different departments moneyover the period of time.
But what I put to them wasthat everybody is going to
(06:13):
want to see the initial saving.
Even if they do know and do expectin the future that there will
be multipliers of that saving.
Everybody wants to see the saving now.
How do you achieve thatwith what you're doing?
That's an interesting question, Jules.
(06:34):
, I did a BBC Live a couple of weeksago talking about our, , adult pre and
post diagnostic later in life support.
It's also open to peoplethat are self diagnosed, self
identified autistic people.
It's about addressing the crisisin mental health and social care
(06:57):
that's And
particularly where we work,
jules, the pre and post diagnostic adultsupport program, which we run called
embrace autism, , open to people whoare self diagnosed as being autistic
goes a long way to starting to address.
The waiting list crisis for a diagnosisthat exists in most countries.
(07:23):
Now we would love it if there wasbottomless public funds that would
allow every single autistic personto be able to get a diagnosis for
autism within a matter of weeks.
This isn't seen as being something thatgovernments have the money or have the
willingness to find the money to do.
(07:47):
Coupled with that, the amount of us thatare autistic is way higher than any of
the reported statistics of 1 in 100, etc.
, having an approach which listens to thepeople we're supporting, If someone has
thought they're autistic for severalmonths, has researched it, you might
(08:09):
even say, , then it's highly likelythat that person is indeed autistic.
Now, do we allow 2, years, or in somecases, a diagnosis to never happen?
In parts of the country, it's impossible.
To get an adult autism diagnosisparts of the country, it's
impossible to get an adult autismdiagnosis unless you're in crisis.
(08:33):
That's crisis deemed by someone else, notby the person reporting how they feel.
Then there needs to be alternatives.
And by offering people a relatively quickto access service, , if people time it
right, it might be a few weeks, worstcase scenario, it's going to be a couple
of months max to then be able to comeand explore what it is to be autistic
(08:57):
with a group of other autistic peopleled by trained autistic professionals.
It might not sound like much,but just six weeks of doing that.
Does change people's lives.
Yeah, so the mechanism of saving themoney then is that they're not wasting
everybody's resources in other areas.
(09:20):
Waiting for diagnosis in twoyears or three years or five
years or in the Oxford area.
I think it was 14 years.
You're saying that the drugs thatare being spent on them because
they're getting inappropriatedepression treatments or the constant
need for them to be supported inother ways, those costs are saved.
(09:42):
Is that it?
Yes, because it's getting to root causes.
We have a a mental health care systemthat's set up to treat symptoms that
very rarely gets down to root causes.
You see this where figures that sit forautistic people and disordered eating
(10:04):
where it's believed as many as 80 percentof people that struggle with disordered
eating are most likely autistic.
If you're looking at the figuresfor addiction, where one in three of
us autistic adults will experienceaddiction at some point in our
life, you mentioned untreatabledepression, the nickel anxiety.
There's a whole conversation thatactually doesn't get to the root cause
(10:26):
and it's been great to see recently thatthere's been quite a lot of debunking
of the original research that's ledto , depression and serotonin levels
and also the original research thatsurrounds prescribing antidepressants.
If you look at the original researchlinked to antidepressants, it was
said that They should be shortterm prescribed, three months, and
(10:48):
that it should only ever be done inconjunction with talking therapies.
It's super, super easy to go toyour GP, get prescribed any number
of different antidepressants,but try and get talking therapy.
And that's a very, very different matter.
Yeah, I hear you there.
, when I was diagnosed, I was diagnosedby a lovely, , professional.
(11:10):
, and the one thing that struck meas a negative at the end of it was
the last sentence in the report.
And that was referral back to a GPwith the option of him to prescribe
me long term anti anxiety medication.
(11:31):
Medication, which actually lookingit up was anti depression medication.
I also spoke to one of our, at ourfour, four, four drop in, , a little
while ago with Lucy and Lucy issomebody who describes herself as
being under all kinds of care andmedication over the years, , lately
(11:56):
finding out she's diagnosed as autistic.
And the waste of resources that washappening all up until that time, even to
the point where she was going to be takeninto sheltered housing and sheltered care.
, and since her diagnosis, she is a personthat is out there in the community
(12:19):
and taking part in the community as a,as a, as a benefit to the community.
So it's not just what was beingspent on her that has been removed.
It's now what she's giving back.
These are the examplesthat make it for me.
Jules, I couldn't agree more.
(12:40):
, I'm gonna try and not, , borelisteners today with statistics.
, I'm gonna give you one statistic.
, we had our pre and post diagnostic adultautism support externally evaluated.
Turned into a report which wasshared with the Scottish government.
Basically showing that Autism supportshould be designed and delivered by
professionals who are also autistic,and it should involve the autistic
(13:03):
community right throughout everystage of its development, and that its
development should should be ongoing.
I was reading recently a, , Documentaround adult, , autism suicides and
actually looking at some of the mainindicators that made a difference
between someone having suicidalideation and someone actually
potentially maybe being a suicide risk.
(13:25):
One of the main indicators was peoplefeeling like they had no purpose in life.
Now, at Autistic Knowledge Developmentwe developed a simple five question
before and after set of questionsfor people receiving support.
That way we can actually measure,has, has this made any tangible
difference to that person's life?
Do you currently feel that you have,, anything to offer society, , that
(13:49):
you have a purpose in life how do youcurrently feel about being autistic?
, external evaluation, , in the pilot forour service, and is still continuing now.
Before people started one infour of the autistic people felt
that they had no purpose in life.
And after just six weeks ofsupport, this dropped to one in 10.
(14:10):
That tells you everythingthat you need to know.
Sometimes the most complex problemscan have the most simple solutions.
Actually putting.
Autistic people that are having a similarexperience of finding out that they're
autistic later in life in a room withother professionals who have been there
before in a program that was created bypeople who not only have professional
(14:32):
knowledge but have lived experience ofwhat it's like to find out you're autistic
or to think that you might be autistic.
There's, there's something that happensin just people being able to talk.
Openly, for many people for the firsttime ever, for people for the first
time ever to knowingly talk to thefirst other autistic people that
(14:52):
they've ever met, some autistic peopleto have finally met autistic people
that weren't just fellow service users.
Now, I've been a service userand a runner service as well,
a huge part of what we do.
normalizes the autistic experience.
Looking at positive experiences andpathways of getting a diagnosis.
(15:13):
It's still incredibly medicalized andactually misses out a part of the human
element, which is why so many of usautistic people struggle with having a
positive identity link to being autistic.
Another comment came up lastnight in one of our lives and
somebody posed the question.
(15:36):
Why do we need this diagnosis?
Because if we as autistic people couldget together as a group, support each
other, and give ourselves the, the senseof, um, what it is to be autistic, much
of what you're saying will fall away.
(15:58):
It felt to them that there werevested interests in making sure
that we were first diagnosed andthen after our diagnosis, that
money was spent on the differentdrugs or the different treatments.
And that there's an industry around usthat we are in some way subverting and
(16:18):
there'll be a kickback against that.
Is there a kickback against you?
Yes.
, because by what we're doing atautistic knowledge development, We are
potentially an extinction event forbits of the sector that need to change.
One of the reasons why you'll, you'llhear me quote statistics and figures is
(16:40):
that's how we're going to get changed.
Dislike me as a human being, youmight dislike what we're doing,
you might dislike our organization.
But you can't argue with the coldhard facts of what we're doing and
how we're doing and how and why itworks and the fact it's repeatable
and the fact that it's making a realdifference to a lot of people's lives
(17:01):
and even just looking for reach.
So in the first six monthsof the pilot of our support.
We had over 250, 000 peopleengage with our online content,
which again is a static resource.
There's a huge elephant in the room inautism support in the fact that many
(17:23):
autistic people would never dream ofgoing for one to one support or would
never dream of going for group support.
Left In this kind of nowherespace, which is something that
we've done quite a lot to address.
Now, , we want the statusquo to come with us.
We want the status quo to feelenabled, that they can change with
us, that they can be part of it.
(17:45):
But it's this balancing act of notallowing ourselves to basically
disability whitewash , changethat's not really happening.
We really want to work with thestatus quo, but the status quo needs
to not the perception of change.
It's actual real change, and I thinkthis is the bit where it could be
compared to turning an oil tanker orthe QE2 I do believe it's changing,
(18:07):
there's going to be struggle and there'sgoing to be resistance to this what's
happening now is a paradigm change.
We now have evidencefor the paradigm change.
, when people have thought, Oh, autisticpeople, just go back to being service
users alone and keep it nice and simple,we actually have an evidence base that
says, if you genuinely care about autisticpeople and the autistic community, and
(18:32):
you're a non autistic person workingin the sector, then you need to start
building a pipeline for autistic employeesto come and deliver your service.
If you're an autistic leader, youneed to create a leadership pipeline.
When you're shortlisting for a chiefexecutive of a big autism charity, saying,
, there aren't any suitable autisticcandidates isn't going to be good enough.
(18:53):
Let's just sideline them.
Let's just go around them instead ofgoing through and trying to bring these.
Dinosaurs with us, with theirresistance, they're too much
weight, they're too much to carry.
Let's just go straight to the sources.
You know, the money is gonna be cut.
(19:13):
And the job is going to be done for us.
They're going to lose their grantingand they're going to lose their money
because the general public is not goingto pay as much as would be needed under
the conventional system to support it.
So what we do as a group, well,what you do if you're professional
(19:35):
enough or what the people who are
working.
As professionals, in using theneurodiversity paradigm, go
around them, take the cheaperversion and compete with it.
(19:57):
Don't bother trying to takethese dinosaurs with us, surely.
The reality is a lotmore complex than that.
And if you look at any minoritycommunity, or any minority individual,
That's struggling to get to a positionwhere they're able to actually make
change and lead to change themselves.
(20:20):
You have to jump through manyhoops where the people in power
give you a little bit of power.
Now, if you're being givenpower, that's not actual power.
And we are a ways away fromgetting recognized as a community.
So the example that I always give isif this was women's rights, we would
(20:40):
expect all the chief executives ofwomen's rights organizations to be women.
And we'd expect women's mentoringto be delivered by women.
We'd expect women's training,women's support for it all to be
designed and delivered by women.
You might have one or two men somewherein the background, but you would
expect the vast majority of peoplein the room at any point to be women.
(21:02):
We're not there yetwith the autism sector.
We launched our Reports for our preand post diagnostic service, uh, just
before Christmas, December the 12that Holyrood, and it was brilliant.
We were sponsored by an openly autisticand ADHD MSP, Aaron Adam, who has
(21:23):
done an awful lot for normalizing.
Being neurodivergent andnormalizing neurodivergent people
being in positions of power.
We were also very lucky to get ministerMarie Todd, who's the minister for health
and social care amongst a few otherthings in Scotland there to say some
words about what we're doing and actuallythe message from senior leadership
(21:46):
there is politely get out of the way.
This is the direction of travel.
It's as well mean as it can be, peopleneed to stop doing to the autistic
community and actually enable the autisticcommunity to be able to help themselves.
Now, this is a bitter pill for a lotof people to swallow, but if you're
(22:10):
out helping a community, you shouldultimately know you have done a good job.
When you are no longer needed.
But this is one of thedilemmas that we have here.
So there are some very pragmaticand progressive, non autistic
people in the autism sector.
But there are also some autistic peoplewho deserve kind of more credit than
(22:31):
they get working in some organizations.
That still have non autisticplaceholders who have very much
made it clear that they have nointention of getting out of the way.
So, again, everyone needs towork together to get this done.
And that's 1 of the difficult thingsthat I've had quite a lot of chats with
other autistic advocates about that.
(22:53):
Actually, as much as it would be lovelyto go in a straight line from A to B.
The power dynamics that are involvedhere means that there are going to be
multiple times where people who wouldnot naturally be sitting around the
same table together are going to haveto sit around the same table together,
(23:13):
.I love the way that you didn't fall into that temptation that I offered you.
I offered you the temptation andyou're saying it is about cooperation.
Um, so when we say about paradigmshifts and things like this, We are
pragmatic and we do understand thateverybody does have a place in this.
(23:35):
It's just we do need tochange what we're doing.
Yeah.
Yeah.
So if we're looking at globalpolitics, so anyone that is listening
in North America at the moment,you've got a very polarized country.
MAGA, make American,make America great again.
You've got , Democrats.
You're looking deadlock,regardless of who's been in power.
(23:55):
Ultimately got a deadlock because youcan't get these two opposing sides
to sit down and agree on anything.
So if one says black,the other says white.
If one says white, the other says black.
, As uncomfortable as it is for progressto happen, it needs to be done together.
Putting past grievances to one side,putting your own personal agenda to
(24:22):
one side, actually thinking, , theprize here is long standing change.
For the autistic community,permanent change, permanent positive
change for the autistic community.
So everyone leave the baggageand their egos at the door, and
then let's get the job done.
Now I've made that sound verysimple there, it's not that
simple, but that's the aim.
(24:45):
Gulp.
Take a breath, Sean.
Excuse me.
Laughter.
Okay, um.
I think you're very wise to emphasize.
The need for change on both sides.
I don't even want to call it sides.
(25:07):
, I came into playing at being useful inautism, , from a completely different
area, and the first thing I wasexposed to was rather prickly, radical.
, autistic groups who hadtheir own little cliques.
I thought if, if these are thepeople representing the community
(25:28):
that I'm now part of, I'm not happy.
Um, I don't want to be representedas a, as a rather chip on my
shoulder, complaining, um, protester.
I want to be part of a change thatas you say, the word sustainable.
So, what I'm hearing from you isa real willingness to, to bring
(25:56):
other people on board with you.
Um, including the community that Ihave just described as difficult.
, I'll tell you something, I'm goingto go down to, , The United Kingdom
Society for Behaviour Analysts, , andI'm going to speak at their national
(26:19):
conference, their yearly conference.
I'm always in two mindsabout these kind of things.
Because the tokenism is the norm.
It's always a possibilityyou're going to be used.
You're going to be used to say,Oh look, we are speaking to Jules.
(26:40):
He's got lots of listenerson autistic radio.
So we can't be that bad, can we?
How do we make it so that the people inthe past who've been doing the protesting
and have to some degree, Being the driversof real change to get us to this point,
(27:00):
how do we take them out of protest modeand bring them into cooperation mode?
That's a very difficult question and it'ssomething that we've been looking to do.
So one of the reasons we set upautistic knowledge development, which
will be our third birthday this Marchcoming up, was because it's dead
easy to sit and criticize everythingand throw stones from the sideline.
(27:24):
It's a lot harder to come up withworkable, viable alternatives.
And it's even harder to come upwith workable, viable alternatives
that are value for money and thatactually do what they say they're
going to do and that you can provethey do what they're going to do.
There's an element here where it'smaking sure we don't conflate our own
(27:47):
egos with the needs of our community.
And where we don't conflatewhatever influence, whatever
followers we may have online.
With actually being areal measure of our worth.
So every single person in theautistic community has equal value.
(28:09):
There are some of us who are able toget up and advocate for parts of the
community that either don't want to,or can't advocate for themselves.
And by can't, I mean, mightnot necessarily have access.
Some of the forums to someof the people of influence to
actually get their voices heard.
But it's been able to take a step back andsay, look, right, what are we doing here?
(28:31):
Now, I'm going to give you a examplefrom the Learning Disability, Autism
and Neurodivergent Bill in Scotland.
So, that was kicked off by three nonautistic led organisations saying
the autistic community wants this.
Now that was a huge own goal becausethey didn't include any autistic people
in kicking off a bill that was supposedto be buy in for autistic people, before
(28:57):
the Other communities got involved.
It was originally justgoing to be an autism bill.
And eventually it got put in as anautism and learning disability bill.
And then other neurodivergencesgot, got added.
If you look at the autism part ofthat, the non autistic parts of
the sectors, endless campaigningsaying, we want this bill and
talking over the autistic community.
(29:19):
I can say, I've tried to do thismutually, but I can understand why
the firebrand autistic advocatesgot really wound up about this.
So that then turned it into almost, asthe Fire Brigand Autistic Advocates,
we're going to dislike everythingabout this, in principle, because
you didn't include us at the startand because it wasn't our idea.
(29:41):
And we've ended up having a protractedprocess over, With it having a realistic
chance to happen over the last fouryears, it's now meant the bill's not
going to happen under this government.
We're going to have to wait for a Scottishgeneral election to see who's in power
and then it may or may not happen.
And that's largely becauseinfluential people, both in the
(30:05):
autistic led part of the sectorand the non autistic led part
of the sector, effectively gotinto a battle with each other.
And it was almost like flexing powermuscles and flexing influence muscles.
To a point where actually Both sides,the for and against bill, now both agree
that they're for the bill, which is anunusual outcome for someone who's been
a part of all of it, and certainly verydifferent to some of the conversations I
(30:27):
have witnessed firsthand, and also that noone's willing to take responsibility for,
between everyone, they have collectivelystopped a bill that would have helped it.
a lot of our communityimmediately from happening.
Now, if that's not a lesson for beingable to take a step back and look at
(30:48):
what the end goal is, so all of us shouldbe able to agree we want better life
outcomes for the autistic community.
And if we can just have a very simplegoal like that, that allows there to be
complexities of approach, that allowsthere to be difference of opinions.
But it gets away from thethem and us narrative.
Um, I, I have no, , realknowledge of the bill.
(31:11):
I had a little bit of a look , Iget a lot of emails and people
want me to be interested in it.
, I have to say that my prejudiceright at the beginning was that this
is just for people to masturbatein public about, , whether they
were achieving anything or not.
And I didn't see the point of a,a bill to go through Parliament.
(31:33):
Whether it's a good bill or a badbill, I thought it was a diversion
and a dumping ground for peopleand an an absorber of people's
energies, , that diverted possiblegood advocacy from Autistic people
into into a dead end in the same way.
(31:56):
It looks very much to me as though thisconsultation that we have in the Scottish
Parliament of the thing, the thing ofwhich I can't remember the name of that
I pop into every now and again lookslike it's just a way of keeping us busy.
But then I did speak with oneof the professionals out there
(32:18):
in a recent recording thatI'll be publishing soon, Ramon.
Now, Ramon is unusual because he comesfrom a social work background in autism,
not a medical background, and he dealswith autistic people on a daily basis, and
(32:38):
he puts in that podcast the case that thecreation around the bill, the need for the
research around the bill, was a very goodResult in itself, so almost as though the
process of creating the bill creates someof the tools that we need in other areas.
(33:03):
So, where do you stand onthe bill going forward now?
As an organisation, we have kepta neutral stance, and that's to
encourage, when we've been involved inrunning our own consultation events,
for people to have any opinion and tofeel safe and welcome to discuss it.
And we've been one of the fewplaces where people have been able
(33:24):
to have healthy discussions, forand against, in different ways.
To the bill, we've welcome peoplewho don't even like to refer to
themselves as being autistic.
We've got people who describethemselves as autistic people
as a person with autism.
We don't do any of the policingof thoughts or ideas or ideology.
The only thing that we did police wasmaking sure that it was a safe space.
(33:47):
And there was toleranceas well as understanding.
Now, if you can do that.
You might not change people's pointof views, but if you can understand
someone's point of view that has theopposite point of view to you, then
that's something you can work with.
And that's something that you canstart to progress your own thinking.
If it's just, No, you're wrong, I'm right.
(34:08):
No, you're wrong, I'm right.
That just ends up nowhere and it's theperson that shouts loudest wins, or
when everyone's shouting at the samevolume, the bill ends up not happening.
I have, A similar but completely differentview to what you stated there, Jules,
about my initial thoughts to the bill.
I actually think it's got the potentialto be a lightning rod for positivity.
(34:32):
And there's something symbolic abouthaving the word autism in a law.
That does a lot more than things likethe UN Charter for Human Rights or some
of the other existing laws that areout there that should actually give us
all of the protections that we need.
There's actually something by sayingthat as a community, we are worthwhile
(34:54):
enough to have a law that mentionsus, even if the detail of the law is.
paper thin, there's actually somethingreally symbolically important about this
happening that actually, hello, we'reover here, we're worthwhile happening.
And for me, if I could get a messageout to people on, who are either neutral
(35:15):
about the bill or really wildly for, orreally wildly against, is actually, look,
this is better happen than not at all.
It's never going to please everyone.
But it's a direction of travel and thisis the start of a direction of travel.
So, we're going to buildthe world's first motorway.
(35:36):
But we got so hung up on the firstmile stretch of the motorway,
that all future motorway planshave been cancelled forever.
And there's a degree of literal shortsightedness here, that's happening on
both sides of the argument actually,anything that puts autism in the
spotlight, at a government and lawmakinglevel, has got to be a positive.
(36:01):
I'll take that on board, Sean.
I'll take that on board.
And maybe I'll get a bitmore interested in it.
, I'm clearly saying I justwasn't that interested in it.
It just looked like a diversion to me.
So, if there's anybody listeningnow that has been part of
that, that has, Some good, moreinformation to educate me on that.
(36:22):
Please come forward, have aconversation with me, and we might
even start a series about it.
If there are enough of you, , lawmakingreminds me about the Scottish parliament.
Because I was there when you, , gavethat presentation to the organizations
present, , I had the impression thatmany of the organizations present
(36:46):
about around that big table were peoplethat hadn't quite, , followed the.
Uh, expectations of the fundingthat were, , offered to you when
you created this, um, program.
They were supposed to have a meaningfulinput from the autistic population
(37:06):
when they designed their programs.
And you're telling me that youhave taken, , a meaningful input.
Do you think that the fundersare going to actually behave?
(37:27):
As though they want ameaningful input in the future.
Because what I saw, was That allof the other got away with it.
They didn't take a, um, meaningful input.
The things that theyproduced had variable values.
Some of them harmfulvalues, in my opinion.
Um, uh, but if they're still ableto then go and get more money and
(37:53):
do similar things, nothing changes.
Is there any teeth anyway?
I'm going to share a little bit about,uh, my previous working professional life.
So I was a, it's going to soundbraggy, but I was a, I was a very
senior specialized business advisorand business consultant, but
(38:15):
it's not as boring as it sounds.
So I was working across universitycivic society and doing a lot with
social enterprise and charities.
I did a, report with the UK governmentlooking at how to better fund.
The social enterprise and charitysector and what was wrong with it.
(38:36):
This is going back 15 yearsago, all kind of big charity
and social enterprise funders.
You normally either directly had corporatecommercial banks stakeholders at the
top of it, or you had someone that haddone 20, 30 years or kind of more junior
level, maybe done 5 or 10 years workingin corporate banking, running, doing that.
(38:58):
So the analogy is.
It would be like trying to get McDonald'sto lead on a global campaign for veganism.
It's just never going to happen.
Now, all of the research about,, inclusive organizations and organizations
that manage to engage with the peoplethat they support shows that whatever you
have at the top of an organization, froma diversity point of view, Is whatever
(39:21):
you get out at the bottom and is whatauthenticity you do or don't have with the
communities that you're trying to serve.
And I mentioned in the talk wedid at Holyrood about removing the
glass ceiling for autistic people.
Because there is a change happening,but if I look around, my employed
autistic colleagues in autismorganizations are normally either
(39:43):
frontline staff or in junior management.
And when you start coming to seniormanagement and heads of organizations,
unless you've set the organization upyourself, You don't get any autistic
people running autism organizations in theautism sector, and that needs to change.
So when we talk about removing theglass ceiling, as soon as you remove
(40:05):
the glass ceiling, that's the pointwhen you're going to get actual change.
Because at the moment, and it'shappened to me many times, is you write
a report, you do the hard work, youget the data, And ultimately it's a
room full of non autistic people thatdecide if it does or doesn't happen.
And until we can get one or a fewof us into that kind of ideological
(40:27):
room, then change is going to happenat the pace that it's happening.
Interesting take, interestingtake from, um, from a professional
that's been out there.
A strange thing happenedto autistic radio recently.
Um, we, we don't go around with a beggingbowl looking for money off people because
(40:53):
what we're doing at the moment reallydoesn't cost that very, very much money.
Um, if, if we had money, we wouldexpand different things, but
where we are at the moment is.
Building the thing that we want, thefoundation right, and making sure that
we're all comfortable doing it, andhaving fun with it, and enjoying it, and
it's part of our late diagnosed process.
(41:18):
Um, but we got offered money.
We didn't even have to apply for it.
Are they trying to muzzle us?
It came from a rather largeorganization, one of the big
charities from a, from a fund.
Are they giving us a smallamount of money to keep us quiet?
(41:38):
It's.
I'd say nothing in lifeis ever that binary.
My own theory on humanity isyou've got probably 1 percent
of us are truly, truly good.
1 percent of us are truly, truly evil.
And the rest of humanity,somewhere in the middle.
Governed by self interest.
A lot of people are closer to beingtruly, truly good and you'll get some
(42:01):
people are closer to being truly evil,but ultimately self interest when
push comes to shove rules the world.
, there are some non autistic peoplewho are genuinely great advocates.
And are in this for the right reasons.
And then there will also be othernon autistic leaders who realize
this is the direction the wind'sblowing, we'd better get on board.
(42:24):
, I am a pragmatist, I did a talkyears ago called Doing the Right
Things for the Wrong Reasons.
, on a purely outcomes for the autisticcommunity level, I don't care if you're
doing the right thing because you morallybelieve it's the right thing to do, or
you're doing the right thing because youknow this is the best way to keep your job
as a non autistic person in the sector.
(42:44):
If you're positively looking for, finding,engaging with, supporting, enabling,
working with, not doing to the autismcommunity, then that's cool with me,
however you've ended up in that place.
Well, we'll see what happens.
It's not a huge amount of money.
It's a, you know, it's,it's pocket money, really.
(43:06):
, I've doubled it myself byputting some money in myself.
And what I've decided to do is to.
Is to pass it back to the organizationand say, look, with this money, what
we're going to do is we're going tohave some mobile studios or more of
our mobile studios, , send them outto your organization, send them out
to different people within, , autismout there, both the neurodivergent
(43:29):
and the non neurodivergent and givethem more access to the airwaves.
, so we'll see whether they comeon board and actually make some.
, noise with us and they, they comeand explain some of the things that
they're doing and they take thefear of them away from the community
that, that would be an interestingthing if they take me up on that.
(43:50):
Yeah, yeah, Jules, it was, and it'sone of the things when I kind of look
at how I work as a human being, butalso how I work as a autistic and
ADHD human being doing what I'm doing.
The, the battery, the energy, the fuel.
That allows me to getthings done is positivity.
(44:12):
Now, don't get me wrong.
I have some dark days and I have somepoints where I just feel like I'm banging
my head against a brick wall with it.
But I always try and bring myselflike a compass to find where true
north is for me and true north forme is being able to remain positive.
Doing what I'm doing, because ashuman beings, we pick up emotions by
(44:34):
osmosis, both with the people thatmyself and my organization helps, so
the fellow autistic community, butalso the non autistic community and non
autistic leaders, which we work with.
I need to remain positive because Ineed to be able to turn the other cheek.
(44:57):
I need to be able to keep themomentum going to what we're doing.
And I also need to be able tostay good natured because , I
encounter stereotypes and prejudice.
Not every day, but regularly.
And to be able to do this, I, we needto stay positive and we need to, as a
(45:20):
community, believe that it can be better.
Otherwise, we'll end up in apathy.
So it'll be cool to seewhere this pans out, Jules.
, I'm actually making a concertedeffort, probably even today, to
actually be more positive thanI am in, in, in private moments.
But that, from my own experience,has been the way To get change done.
(45:41):
I come in as an angry autistic, I'mjust going to get shut down as being
an angry autistic and nothing more.
But if I can come in and smile throughkind of barbed compliments and ignore
kind of indirect insults and just keepmy eyes on the bigger goal here, then
(46:01):
that's the way to get things done.
And that's the way to changepeople's hearts and minds as to
what we as a community can do asautistic people helping ourselves.
Well, I'm going to shut you downbecause I have enough words from you.
, there's enough here in our conversationtoday to put out a 30 minute podcast
(46:23):
that is about the amount thatpeople will listen to, , a dense.
Interesting conversation . Thankyou so much, Sean, for, , for
taking my challenging questions.
Thank you for
having me and AKD Jules.
And you are always welcome.
Most of the bestquestions are challenging.
So
(46:46):
Autistic radio is about us,it's for us, and it's from us.
Autistic radio is about you, it'sfor you, and it can be from you.
We have, every single Sunday, drop in, 4.
(47:10):
44pm every Sunday.
That's not live, that's us gettingtogether, us talking, community.
Every Sunday, Harry leads a 5 5 5 p.
m.
A discussion around theFacebook page that he creates.
Involve yourself by suggestingwhat we should talk about next.
(47:35):
Share it with Harry.
And then, the bigger picture.
Advocate.
Use us.
Speak to the world.
Your project, your idea, your enthusiasm.
We have a whole range of differentprograms that will fit what you want.
(47:59):
As far as listening goes, there'ssome challenging stuff out there.
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals, challenging
(48:20):
their ideas, and bringing whatyou say in other spaces to them.
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
Autistic radio is very varied.
(48:42):
We need a favour.
To encourage us, we need you to share us.
When you share us, yougive autistic people power.
When you share us, you makeus impossible to ignore.
When you repost on LinkedIn and Facebookand anywhere else, you're advocating
(49:08):
for everybody in the autistic community.
So pick the things that you'rehappy with and get them out there.
So thank you.
Thank you, thank you.
Thank you, from all of us.
We speak our words, we listen,we speak our words, we listen.
We speak our words.
We listen.
We speak our words.
We listen.
Hello, and welcome.
(00:20):
Welcome to Autistic Radio.
Jules here, speaking with Sean fromAutistic Knowledge Development.
I'm not in Sean's pocket, but I amenthusiastic about what autistic
knowledge development does.
There's some criticism sometimes withinthe autistic community when they see other
(00:42):
autistic people making a career in autism.
And I have to say, the firstthing I need to comment on
that is, who would you prefer?
Who would you prefer to be makinga career in autism other than
autistic people themselves?
So how does that feel, Sean?
(01:04):
Do you get criticized by thecommunity for being an autistic
person making money out of us?
Uh, that statement itself, I would kindof feel a little bit uncomfortable with.
But yeah, I do get criticism from, , Theautistic led community and from the non
autistic we've come along we've decidedthe current paradigm wasn't good enough.
(01:29):
, if you're going to change any situation.
Human beings generally don'tlike and are resistant to change.
And if it's radical change, people reallydon't like it and are really resistant.
That's been true of autistic thenon autistic part as far as actually
making money from the autisticcommunity, the amount of work myself
(01:50):
and my colleague, Leila have done.
Completely off our own backs the factI set Autistic Knowledge Development
up with my own money, not with grantmoney, I think goes a long way to
show the reasons why myself and mycolleagues are in this, we're in this
to change the world, . We need tokeep a roof over our heads as well.
I've devoted my full time energiesto autistic knowledge development.
(02:13):
Three years this March.
Look at what you get for every poundspent with autistic knowledge development
versus what you get for a poundspent elsewhere in the autism sector,
we are very good value for money.
Oh, I like that.
, I think you've answered that really well.
(02:33):
, It's value for money that matters nowadaysmore than anything else, isn't it?
It is, yes, there's a slightly,, obtuse, very dehumanizing way change
gets done in the public sector.
And certainly when you look atprovisions that the state, local,
(02:54):
national government have to provide.
There's a huge master spreadsheet. That tells you the cost of a
person getting sectioned per day.
That tells you the cost of someonegoing into foster care per day.
That tells you the cost of a personreceiving support for depression.
(03:15):
That tells you the costof, , supporting someone.
If they've been in mental health crisis.
Now, one of the ways where you canmake innovation become part of the
mainstream is if you can not only provethat what you do works and you can
prove how it works and you can provethat it's repeatable with different
(03:36):
people, under the same circumstances,, if you can prove that what you do.
Is cheaper than the existing support.
Where we're really banging the drums.
So our support works best when we canwork with people before they're in crisis.
And it turns into a bitof cold, hard maths.
(03:56):
Nevermind the human cost, which ishuge, but the cold, hard maths of it.
Shows it makes no financial senseto wait for autistic people to reach
crisis, nevermind the human costand everything that we're doing is a
small amount of money upfront to helppeople before they reach crisis point.
(04:17):
And then look at some of thestatistics for unemployment
in the autistic community.
Broadly for disabled people as a whole.
Just over 50 percent of us arein some form of employment.
The autistic community, that dropsto anywhere between 15 and 22
percent in any form of employment.
Now by any, that might evenmean one or two hours a week.
(04:40):
A study being done recently ofpeople in the UK receiving benefits.
Who are autistic just over 75 percentof those people would rather be
earning money and be in employment.
Coming back to the first question ofwould you rather money's going sorry.
Oh, Yardy, Yardy,
(05:02):
Yardy, numbers, numbers, numbers, Yardy,
Yardy, Yardy.
, Our listeners.
We can't be concentrating onall these numbers coming out
of you at the same time, Sean.
, let's go with concepts.
I hear what you're saying there.
I hear that it's possible tosave money by spending money,
(05:25):
and you're in good company.
When I speak to the conventional autismprofessionals out there, They talk
about early intervention with children.
Um, I have the fortunate position tobe able to be making lots of different
recordings with different people withinshort spaces of time with each other.
(05:48):
And I was talking to one of the moreradical professionals, , yesterday,
and they were making this point
early intervention or changes rightat the beginning, save so many.
, different departments moneyover the period of time.
But what I put to them wasthat everybody is going to
(06:13):
want to see the initial saving.
Even if they do know and do expectin the future that there will
be multipliers of that saving.
Everybody wants to see the saving now.
How do you achieve thatwith what you're doing?
That's an interesting question, Jules.
(06:34):
, I did a BBC Live a couple of weeksago talking about our, , adult pre and
post diagnostic later in life support.
It's also open to peoplethat are self diagnosed, self
identified autistic people.
It's about addressing the crisisin mental health and social care
(06:57):
that's And
particularly where we work,
jules, the pre and post diagnostic adultsupport program, which we run called
embrace autism, , open to people whoare self diagnosed as being autistic
goes a long way to starting to address.
The waiting list crisis for a diagnosisthat exists in most countries.
(07:23):
Now we would love it if there wasbottomless public funds that would
allow every single autistic personto be able to get a diagnosis for
autism within a matter of weeks.
This isn't seen as being something thatgovernments have the money or have the
willingness to find the money to do.
(07:47):
Coupled with that, the amount of us thatare autistic is way higher than any of
the reported statistics of 1 in 100, etc.
, having an approach which listens to thepeople we're supporting, If someone has
thought they're autistic for severalmonths, has researched it, you might
(08:09):
even say, , then it's highly likelythat that person is indeed autistic.
Now, do we allow 2, years, or in somecases, a diagnosis to never happen?
In parts of the country, it's impossible.
To get an adult autism diagnosisparts of the country, it's
impossible to get an adult autismdiagnosis unless you're in crisis.
(08:33):
That's crisis deemed by someone else, notby the person reporting how they feel.
Then there needs to be alternatives.
And by offering people a relatively quickto access service, , if people time it
right, it might be a few weeks, worstcase scenario, it's going to be a couple
of months max to then be able to comeand explore what it is to be autistic
(08:57):
with a group of other autistic peopleled by trained autistic professionals.
It might not sound like much,but just six weeks of doing that.
Does change people's lives.
Yeah, so the mechanism of saving themoney then is that they're not wasting
everybody's resources in other areas.
(09:20):
Waiting for diagnosis in twoyears or three years or five
years or in the Oxford area.
I think it was 14 years.
You're saying that the drugs thatare being spent on them because
they're getting inappropriatedepression treatments or the constant
need for them to be supported inother ways, those costs are saved.
(09:42):
Is that it?
Yes, because it's getting to root causes.
We have a a mental health care systemthat's set up to treat symptoms that
very rarely gets down to root causes.
You see this where figures that sit forautistic people and disordered eating
(10:04):
where it's believed as many as 80 percentof people that struggle with disordered
eating are most likely autistic.
If you're looking at the figuresfor addiction, where one in three of
us autistic adults will experienceaddiction at some point in our
life, you mentioned untreatabledepression, the nickel anxiety.
There's a whole conversation thatactually doesn't get to the root cause
(10:26):
and it's been great to see recently thatthere's been quite a lot of debunking
of the original research that's ledto , depression and serotonin levels
and also the original research thatsurrounds prescribing antidepressants.
If you look at the original researchlinked to antidepressants, it was
said that They should be shortterm prescribed, three months, and
(10:48):
that it should only ever be done inconjunction with talking therapies.
It's super, super easy to go toyour GP, get prescribed any number
of different antidepressants,but try and get talking therapy.
And that's a very, very different matter.
Yeah, I hear you there.
, when I was diagnosed, I was diagnosedby a lovely, , professional.
(11:10):
, and the one thing that struck meas a negative at the end of it was
the last sentence in the report.
And that was referral back to a GPwith the option of him to prescribe
me long term anti anxiety medication.
(11:31):
Medication, which actually lookingit up was anti depression medication.
I also spoke to one of our, at ourfour, four, four drop in, , a little
while ago with Lucy and Lucy issomebody who describes herself as
being under all kinds of care andmedication over the years, , lately
(11:56):
finding out she's diagnosed as autistic.
And the waste of resources that washappening all up until that time, even to
the point where she was going to be takeninto sheltered housing and sheltered care.
, and since her diagnosis, she is a personthat is out there in the community
(12:19):
and taking part in the community as a,as a, as a benefit to the community.
So it's not just what was beingspent on her that has been removed.
It's now what she's giving back.
These are the examplesthat make it for me.
Jules, I couldn't agree more.
(12:40):
, I'm gonna try and not, , borelisteners today with statistics.
, I'm gonna give you one statistic.
, we had our pre and post diagnostic adultautism support externally evaluated.
Turned into a report which wasshared with the Scottish government.
Basically showing that Autism supportshould be designed and delivered by
professionals who are also autistic,and it should involve the autistic
(13:03):
community right throughout everystage of its development, and that its
development should should be ongoing.
I was reading recently a, , Documentaround adult, , autism suicides and
actually looking at some of the mainindicators that made a difference
between someone having suicidalideation and someone actually
potentially maybe being a suicide risk.
(13:25):
One of the main indicators was peoplefeeling like they had no purpose in life.
Now, at Autistic Knowledge Developmentwe developed a simple five question
before and after set of questionsfor people receiving support.
That way we can actually measure,has, has this made any tangible
difference to that person's life?
Do you currently feel that you have,, anything to offer society, , that
(13:49):
you have a purpose in life how do youcurrently feel about being autistic?
, external evaluation, , in the pilot forour service, and is still continuing now.
Before people started one infour of the autistic people felt
that they had no purpose in life.
And after just six weeks ofsupport, this dropped to one in 10.
(14:10):
That tells you everythingthat you need to know.
Sometimes the most complex problemscan have the most simple solutions.
Actually putting.
Autistic people that are having a similarexperience of finding out that they're
autistic later in life in a room withother professionals who have been there
before in a program that was created bypeople who not only have professional
(14:32):
knowledge but have lived experience ofwhat it's like to find out you're autistic
or to think that you might be autistic.
There's, there's something that happensin just people being able to talk.
Openly, for many people for the firsttime ever, for people for the first
time ever to knowingly talk to thefirst other autistic people that
(14:52):
they've ever met, some autistic peopleto have finally met autistic people
that weren't just fellow service users.
Now, I've been a service userand a runner service as well,
a huge part of what we do.
normalizes the autistic experience.
Looking at positive experiences andpathways of getting a diagnosis.
(15:13):
It's still incredibly medicalized andactually misses out a part of the human
element, which is why so many of usautistic people struggle with having a
positive identity link to being autistic.
Another comment came up lastnight in one of our lives and
somebody posed the question.
(15:36):
Why do we need this diagnosis?
Because if we as autistic people couldget together as a group, support each
other, and give ourselves the, the senseof, um, what it is to be autistic, much
of what you're saying will fall away.
(15:58):
It felt to them that there werevested interests in making sure
that we were first diagnosed andthen after our diagnosis, that
money was spent on the differentdrugs or the different treatments.
And that there's an industry around usthat we are in some way subverting and
(16:18):
there'll be a kickback against that.
Is there a kickback against you?
Yes.
, because by what we're doing atautistic knowledge development, We are
potentially an extinction event forbits of the sector that need to change.
One of the reasons why you'll, you'llhear me quote statistics and figures is
(16:40):
that's how we're going to get changed.
Dislike me as a human being, youmight dislike what we're doing,
you might dislike our organization.
But you can't argue with the coldhard facts of what we're doing and
how we're doing and how and why itworks and the fact it's repeatable
and the fact that it's making a realdifference to a lot of people's lives
(17:01):
and even just looking for reach.
So in the first six monthsof the pilot of our support.
We had over 250, 000 peopleengage with our online content,
which again is a static resource.
There's a huge elephant in the room inautism support in the fact that many
(17:23):
autistic people would never dream ofgoing for one to one support or would
never dream of going for group support.
Left In this kind of nowherespace, which is something that
we've done quite a lot to address.
Now, , we want the statusquo to come with us.
We want the status quo to feelenabled, that they can change with
us, that they can be part of it.
(17:45):
But it's this balancing act of notallowing ourselves to basically
disability whitewash , changethat's not really happening.
We really want to work with thestatus quo, but the status quo needs
to not the perception of change.
It's actual real change, and I thinkthis is the bit where it could be
compared to turning an oil tanker orthe QE2 I do believe it's changing,
(18:07):
there's going to be struggle and there'sgoing to be resistance to this what's
happening now is a paradigm change.
We now have evidencefor the paradigm change.
, when people have thought, Oh, autisticpeople, just go back to being service
users alone and keep it nice and simple,we actually have an evidence base that
says, if you genuinely care about autisticpeople and the autistic community, and
(18:32):
you're a non autistic person workingin the sector, then you need to start
building a pipeline for autistic employeesto come and deliver your service.
If you're an autistic leader, youneed to create a leadership pipeline.
When you're shortlisting for a chiefexecutive of a big autism charity, saying,
, there aren't any suitable autisticcandidates isn't going to be good enough.
(18:53):
Let's just sideline them.
Let's just go around them instead ofgoing through and trying to bring these.
Dinosaurs with us, with theirresistance, they're too much
weight, they're too much to carry.
Let's just go straight to the sources.
You know, the money is gonna be cut.
(19:13):
And the job is going to be done for us.
They're going to lose their grantingand they're going to lose their money
because the general public is not goingto pay as much as would be needed under
the conventional system to support it.
So what we do as a group, well,what you do if you're professional
(19:35):
enough or what the people who are
working.
As professionals, in using theneurodiversity paradigm, go
around them, take the cheaperversion and compete with it.
(19:57):
Don't bother trying to takethese dinosaurs with us, surely.
The reality is a lotmore complex than that.
And if you look at any minoritycommunity, or any minority individual,
That's struggling to get to a positionwhere they're able to actually make
change and lead to change themselves.
(20:20):
You have to jump through manyhoops where the people in power
give you a little bit of power.
Now, if you're being givenpower, that's not actual power.
And we are a ways away fromgetting recognized as a community.
So the example that I always give isif this was women's rights, we would
(20:40):
expect all the chief executives ofwomen's rights organizations to be women.
And we'd expect women's mentoringto be delivered by women.
We'd expect women's training,women's support for it all to be
designed and delivered by women.
You might have one or two men somewherein the background, but you would
expect the vast majority of peoplein the room at any point to be women.
(21:02):
We're not there yetwith the autism sector.
We launched our Reports for our preand post diagnostic service, uh, just
before Christmas, December the 12that Holyrood, and it was brilliant.
We were sponsored by an openly autisticand ADHD MSP, Aaron Adam, who has
(21:23):
done an awful lot for normalizing.
Being neurodivergent andnormalizing neurodivergent people
being in positions of power.
We were also very lucky to get ministerMarie Todd, who's the minister for health
and social care amongst a few otherthings in Scotland there to say some
words about what we're doing and actuallythe message from senior leadership
(21:46):
there is politely get out of the way.
This is the direction of travel.
It's as well mean as it can be, peopleneed to stop doing to the autistic
community and actually enable the autisticcommunity to be able to help themselves.
Now, this is a bitter pill for a lotof people to swallow, but if you're
(22:10):
out helping a community, you shouldultimately know you have done a good job.
When you are no longer needed.
But this is one of thedilemmas that we have here.
So there are some very pragmaticand progressive, non autistic
people in the autism sector.
But there are also some autistic peoplewho deserve kind of more credit than
(22:31):
they get working in some organizations.
That still have non autisticplaceholders who have very much
made it clear that they have nointention of getting out of the way.
So, again, everyone needs towork together to get this done.
And that's 1 of the difficult thingsthat I've had quite a lot of chats with
other autistic advocates about that.
(22:53):
Actually, as much as it would be lovelyto go in a straight line from A to B.
The power dynamics that are involvedhere means that there are going to be
multiple times where people who wouldnot naturally be sitting around the
same table together are going to haveto sit around the same table together,
(23:13):
.I love the way that you didn't fall into that temptation that I offered you.
I offered you the temptation andyou're saying it is about cooperation.
Um, so when we say about paradigmshifts and things like this, We are
pragmatic and we do understand thateverybody does have a place in this.
(23:35):
It's just we do need tochange what we're doing.
Yeah.
Yeah.
So if we're looking at globalpolitics, so anyone that is listening
in North America at the moment,you've got a very polarized country.
MAGA, make American,make America great again.
You've got , Democrats.
You're looking deadlock,regardless of who's been in power.
(23:55):
Ultimately got a deadlock because youcan't get these two opposing sides
to sit down and agree on anything.
So if one says black,the other says white.
If one says white, the other says black.
, As uncomfortable as it is for progressto happen, it needs to be done together.
Putting past grievances to one side,putting your own personal agenda to
(24:22):
one side, actually thinking, , theprize here is long standing change.
For the autistic community,permanent change, permanent positive
change for the autistic community.
So everyone leave the baggageand their egos at the door, and
then let's get the job done.
Now I've made that sound verysimple there, it's not that
simple, but that's the aim.
(24:45):
Gulp.
Take a breath, Sean.
Excuse me.
Laughter.
Okay, um.
I think you're very wise to emphasize.
The need for change on both sides.
I don't even want to call it sides.
(25:07):
, I came into playing at being useful inautism, , from a completely different
area, and the first thing I wasexposed to was rather prickly, radical.
, autistic groups who hadtheir own little cliques.
I thought if, if these are thepeople representing the community
(25:28):
that I'm now part of, I'm not happy.
Um, I don't want to be representedas a, as a rather chip on my
shoulder, complaining, um, protester.
I want to be part of a change thatas you say, the word sustainable.
So, what I'm hearing from you isa real willingness to, to bring
(25:56):
other people on board with you.
Um, including the community that Ihave just described as difficult.
, I'll tell you something, I'm goingto go down to, , The United Kingdom
Society for Behaviour Analysts, , andI'm going to speak at their national
(26:19):
conference, their yearly conference.
I'm always in two mindsabout these kind of things.
Because the tokenism is the norm.
It's always a possibilityyou're going to be used.
You're going to be used to say,Oh look, we are speaking to Jules.
(26:40):
He's got lots of listenerson autistic radio.
So we can't be that bad, can we?
How do we make it so that the people inthe past who've been doing the protesting
and have to some degree, Being the driversof real change to get us to this point,
(27:00):
how do we take them out of protest modeand bring them into cooperation mode?
That's a very difficult question and it'ssomething that we've been looking to do.
So one of the reasons we set upautistic knowledge development, which
will be our third birthday this Marchcoming up, was because it's dead
easy to sit and criticize everythingand throw stones from the sideline.
(27:24):
It's a lot harder to come up withworkable, viable alternatives.
And it's even harder to come upwith workable, viable alternatives
that are value for money and thatactually do what they say they're
going to do and that you can provethey do what they're going to do.
There's an element here where it'smaking sure we don't conflate our own
(27:47):
egos with the needs of our community.
And where we don't conflatewhatever influence, whatever
followers we may have online.
With actually being areal measure of our worth.
So every single person in theautistic community has equal value.
(28:09):
There are some of us who are able toget up and advocate for parts of the
community that either don't want to,or can't advocate for themselves.
And by can't, I mean, mightnot necessarily have access.
Some of the forums to someof the people of influence to
actually get their voices heard.
But it's been able to take a step back andsay, look, right, what are we doing here?
(28:31):
Now, I'm going to give you a examplefrom the Learning Disability, Autism
and Neurodivergent Bill in Scotland.
So, that was kicked off by three nonautistic led organisations saying
the autistic community wants this.
Now that was a huge own goal becausethey didn't include any autistic people
in kicking off a bill that was supposedto be buy in for autistic people, before
(28:57):
the Other communities got involved.
It was originally justgoing to be an autism bill.
And eventually it got put in as anautism and learning disability bill.
And then other neurodivergencesgot, got added.
If you look at the autism part ofthat, the non autistic parts of
the sectors, endless campaigningsaying, we want this bill and
talking over the autistic community.
(29:19):
I can say, I've tried to do thismutually, but I can understand why
the firebrand autistic advocatesgot really wound up about this.
So that then turned it into almost, asthe Fire Brigand Autistic Advocates,
we're going to dislike everythingabout this, in principle, because
you didn't include us at the startand because it wasn't our idea.
(29:41):
And we've ended up having a protractedprocess over, With it having a realistic
chance to happen over the last fouryears, it's now meant the bill's not
going to happen under this government.
We're going to have to wait for a Scottishgeneral election to see who's in power
and then it may or may not happen.
And that's largely becauseinfluential people, both in the
(30:05):
autistic led part of the sectorand the non autistic led part
of the sector, effectively gotinto a battle with each other.
And it was almost like flexing powermuscles and flexing influence muscles.
To a point where actually Both sides,the for and against bill, now both agree
that they're for the bill, which is anunusual outcome for someone who's been
a part of all of it, and certainly verydifferent to some of the conversations I
(30:27):
have witnessed firsthand, and also that noone's willing to take responsibility for,
between everyone, they have collectivelystopped a bill that would have helped it.
a lot of our communityimmediately from happening.
Now, if that's not a lesson for beingable to take a step back and look at
(30:48):
what the end goal is, so all of us shouldbe able to agree we want better life
outcomes for the autistic community.
And if we can just have a very simplegoal like that, that allows there to be
complexities of approach, that allowsthere to be difference of opinions.
But it gets away from thethem and us narrative.
Um, I, I have no, , realknowledge of the bill.
(31:11):
I had a little bit of a look , Iget a lot of emails and people
want me to be interested in it.
, I have to say that my prejudiceright at the beginning was that this
is just for people to masturbatein public about, , whether they
were achieving anything or not.
And I didn't see the point of a,a bill to go through Parliament.
(31:33):
Whether it's a good bill or a badbill, I thought it was a diversion
and a dumping ground for peopleand an an absorber of people's
energies, , that diverted possiblegood advocacy from Autistic people
into into a dead end in the same way.
(31:56):
It looks very much to me as though thisconsultation that we have in the Scottish
Parliament of the thing, the thing ofwhich I can't remember the name of that
I pop into every now and again lookslike it's just a way of keeping us busy.
But then I did speak with oneof the professionals out there
(32:18):
in a recent recording thatI'll be publishing soon, Ramon.
Now, Ramon is unusual because he comesfrom a social work background in autism,
not a medical background, and he dealswith autistic people on a daily basis, and
(32:38):
he puts in that podcast the case that thecreation around the bill, the need for the
research around the bill, was a very goodResult in itself, so almost as though the
process of creating the bill creates someof the tools that we need in other areas.
(33:03):
So, where do you stand onthe bill going forward now?
As an organisation, we have kepta neutral stance, and that's to
encourage, when we've been involved inrunning our own consultation events,
for people to have any opinion and tofeel safe and welcome to discuss it.
And we've been one of the fewplaces where people have been able
(33:24):
to have healthy discussions, forand against, in different ways.
To the bill, we've welcome peoplewho don't even like to refer to
themselves as being autistic.
We've got people who describethemselves as autistic people
as a person with autism.
We don't do any of the policingof thoughts or ideas or ideology.
The only thing that we did police wasmaking sure that it was a safe space.
(33:47):
And there was toleranceas well as understanding.
Now, if you can do that.
You might not change people's pointof views, but if you can understand
someone's point of view that has theopposite point of view to you, then
that's something you can work with.
And that's something that you canstart to progress your own thinking.
If it's just, No, you're wrong, I'm right.
(34:08):
No, you're wrong, I'm right.
That just ends up nowhere and it's theperson that shouts loudest wins, or
when everyone's shouting at the samevolume, the bill ends up not happening.
I have, A similar but completely differentview to what you stated there, Jules,
about my initial thoughts to the bill.
I actually think it's got the potentialto be a lightning rod for positivity.
(34:32):
And there's something symbolic abouthaving the word autism in a law.
That does a lot more than things likethe UN Charter for Human Rights or some
of the other existing laws that areout there that should actually give us
all of the protections that we need.
There's actually something by sayingthat as a community, we are worthwhile
(34:54):
enough to have a law that mentionsus, even if the detail of the law is.
paper thin, there's actually somethingreally symbolically important about this
happening that actually, hello, we'reover here, we're worthwhile happening.
And for me, if I could get a messageout to people on, who are either neutral
(35:15):
about the bill or really wildly for, orreally wildly against, is actually, look,
this is better happen than not at all.
It's never going to please everyone.
But it's a direction of travel and thisis the start of a direction of travel.
So, we're going to buildthe world's first motorway.
(35:36):
But we got so hung up on the firstmile stretch of the motorway,
that all future motorway planshave been cancelled forever.
And there's a degree of literal shortsightedness here, that's happening on
both sides of the argument actually,anything that puts autism in the
spotlight, at a government and lawmakinglevel, has got to be a positive.
(36:01):
I'll take that on board, Sean.
I'll take that on board.
And maybe I'll get a bitmore interested in it.
, I'm clearly saying I justwasn't that interested in it.
It just looked like a diversion to me.
So, if there's anybody listeningnow that has been part of
that, that has, Some good, moreinformation to educate me on that.
(36:22):
Please come forward, have aconversation with me, and we might
even start a series about it.
If there are enough of you, , lawmakingreminds me about the Scottish parliament.
Because I was there when you, , gavethat presentation to the organizations
present, , I had the impression thatmany of the organizations present
(36:46):
about around that big table were peoplethat hadn't quite, , followed the.
Uh, expectations of the fundingthat were, , offered to you when
you created this, um, program.
They were supposed to have a meaningfulinput from the autistic population
(37:06):
when they designed their programs.
And you're telling me that youhave taken, , a meaningful input.
Do you think that the fundersare going to actually behave?
(37:27):
As though they want ameaningful input in the future.
Because what I saw, was That allof the other got away with it.
They didn't take a, um, meaningful input.
The things that theyproduced had variable values.
Some of them harmfulvalues, in my opinion.
Um, uh, but if they're still ableto then go and get more money and
(37:53):
do similar things, nothing changes.
Is there any teeth anyway?
I'm going to share a little bit about,uh, my previous working professional life.
So I was a, it's going to soundbraggy, but I was a, I was a very
senior specialized business advisorand business consultant, but
(38:15):
it's not as boring as it sounds.
So I was working across universitycivic society and doing a lot with
social enterprise and charities.
I did a, report with the UK governmentlooking at how to better fund.
The social enterprise and charitysector and what was wrong with it.
(38:36):
This is going back 15 yearsago, all kind of big charity
and social enterprise funders.
You normally either directly had corporatecommercial banks stakeholders at the
top of it, or you had someone that haddone 20, 30 years or kind of more junior
level, maybe done 5 or 10 years workingin corporate banking, running, doing that.
(38:58):
So the analogy is.
It would be like trying to get McDonald'sto lead on a global campaign for veganism.
It's just never going to happen.
Now, all of the research about,, inclusive organizations and organizations
that manage to engage with the peoplethat they support shows that whatever you
have at the top of an organization, froma diversity point of view, Is whatever
(39:21):
you get out at the bottom and is whatauthenticity you do or don't have with the
communities that you're trying to serve.
And I mentioned in the talk wedid at Holyrood about removing the
glass ceiling for autistic people.
Because there is a change happening,but if I look around, my employed
autistic colleagues in autismorganizations are normally either
(39:43):
frontline staff or in junior management.
And when you start coming to seniormanagement and heads of organizations,
unless you've set the organization upyourself, You don't get any autistic
people running autism organizations in theautism sector, and that needs to change.
So when we talk about removing theglass ceiling, as soon as you remove
(40:05):
the glass ceiling, that's the pointwhen you're going to get actual change.
Because at the moment, and it'shappened to me many times, is you write
a report, you do the hard work, youget the data, And ultimately it's a
room full of non autistic people thatdecide if it does or doesn't happen.
And until we can get one or a fewof us into that kind of ideological
(40:27):
room, then change is going to happenat the pace that it's happening.
Interesting take, interestingtake from, um, from a professional
that's been out there.
A strange thing happenedto autistic radio recently.
Um, we, we don't go around with a beggingbowl looking for money off people because
(40:53):
what we're doing at the moment reallydoesn't cost that very, very much money.
Um, if, if we had money, we wouldexpand different things, but
where we are at the moment is.
Building the thing that we want, thefoundation right, and making sure that
we're all comfortable doing it, andhaving fun with it, and enjoying it, and
it's part of our late diagnosed process.
(41:18):
Um, but we got offered money.
We didn't even have to apply for it.
Are they trying to muzzle us?
It came from a rather largeorganization, one of the big
charities from a, from a fund.
Are they giving us a smallamount of money to keep us quiet?
(41:38):
It's.
I'd say nothing in lifeis ever that binary.
My own theory on humanity isyou've got probably 1 percent
of us are truly, truly good.
1 percent of us are truly, truly evil.
And the rest of humanity,somewhere in the middle.
Governed by self interest.
A lot of people are closer to beingtruly, truly good and you'll get some
(42:01):
people are closer to being truly evil,but ultimately self interest when
push comes to shove rules the world.
, there are some non autistic peoplewho are genuinely great advocates.
And are in this for the right reasons.
And then there will also be othernon autistic leaders who realize
this is the direction the wind'sblowing, we'd better get on board.
(42:24):
, I am a pragmatist, I did a talkyears ago called Doing the Right
Things for the Wrong Reasons.
, on a purely outcomes for the autisticcommunity level, I don't care if you're
doing the right thing because you morallybelieve it's the right thing to do, or
you're doing the right thing because youknow this is the best way to keep your job
as a non autistic person in the sector.
(42:44):
If you're positively looking for, finding,engaging with, supporting, enabling,
working with, not doing to the autismcommunity, then that's cool with me,
however you've ended up in that place.
Well, we'll see what happens.
It's not a huge amount of money.
It's a, you know, it's,it's pocket money, really.
(43:06):
, I've doubled it myself byputting some money in myself.
And what I've decided to do is to.
Is to pass it back to the organizationand say, look, with this money, what
we're going to do is we're going tohave some mobile studios or more of
our mobile studios, , send them outto your organization, send them out
to different people within, , autismout there, both the neurodivergent
(43:29):
and the non neurodivergent and givethem more access to the airwaves.
, so we'll see whether they comeon board and actually make some.
, noise with us and they, they comeand explain some of the things that
they're doing and they take thefear of them away from the community
that, that would be an interestingthing if they take me up on that.
(43:50):
Yeah, yeah, Jules, it was, and it'sone of the things when I kind of look
at how I work as a human being, butalso how I work as a autistic and
ADHD human being doing what I'm doing.
The, the battery, the energy, the fuel.
That allows me to getthings done is positivity.
(44:12):
Now, don't get me wrong.
I have some dark days and I have somepoints where I just feel like I'm banging
my head against a brick wall with it.
But I always try and bring myselflike a compass to find where true
north is for me and true north forme is being able to remain positive.
Doing what I'm doing, because ashuman beings, we pick up emotions by
(44:34):
osmosis, both with the people thatmyself and my organization helps, so
the fellow autistic community, butalso the non autistic community and non
autistic leaders, which we work with.
I need to remain positive because Ineed to be able to turn the other cheek.
(44:57):
I need to be able to keep themomentum going to what we're doing.
And I also need to be able tostay good natured because , I
encounter stereotypes and prejudice.
Not every day, but regularly.
And to be able to do this, I, we needto stay positive and we need to, as a
(45:20):
community, believe that it can be better.
Otherwise, we'll end up in apathy.
So it'll be cool to seewhere this pans out, Jules.
, I'm actually making a concertedeffort, probably even today, to
actually be more positive thanI am in, in, in private moments.
But that, from my own experience,has been the way To get change done.
(45:41):
I come in as an angry autistic, I'mjust going to get shut down as being
an angry autistic and nothing more.
But if I can come in and smile throughkind of barbed compliments and ignore
kind of indirect insults and just keepmy eyes on the bigger goal here, then
(46:01):
that's the way to get things done.
And that's the way to changepeople's hearts and minds as to
what we as a community can do asautistic people helping ourselves.
Well, I'm going to shut you downbecause I have enough words from you.
, there's enough here in our conversationtoday to put out a 30 minute podcast
(46:23):
that is about the amount thatpeople will listen to, , a dense.
Interesting conversation . Thankyou so much, Sean, for, , for
taking my challenging questions.
Thank you for
having me and AKD Jules.
And you are always welcome.
Most of the bestquestions are challenging.
So
(46:46):
Autistic radio is about us,it's for us, and it's from us.
Autistic radio is about you, it'sfor you, and it can be from you.
We have, every single Sunday, drop in, 4.
(47:10):
44pm every Sunday.
That's not live, that's us gettingtogether, us talking, community.
Every Sunday, Harry leads a 5 5 5 p.
m.
A discussion around theFacebook page that he creates.
Involve yourself by suggestingwhat we should talk about next.
(47:35):
Share it with Harry.
And then, the bigger picture.
Advocate.
Use us.
Speak to the world.
Your project, your idea, your enthusiasm.
We have a whole range of differentprograms that will fit what you want.
(47:59):
As far as listening goes, there'ssome challenging stuff out there.
Because amongst the identity, theentertainment, and the community,
we also make serious programs withautism professionals, challenging
(48:20):
their ideas, and bringing whatyou say in other spaces to them.
A lot of those are difficult listens,but it's a holistic gathering.
It comes all together.
Autistic radio is very varied.
(48:42):
We need a favour.
To encourage us, we need you to share us.
When you share us, yougive autistic people power.
When you share us, you makeus impossible to ignore.
When you repost on LinkedIn and Facebookand anywhere else, you're advocating
(49:08):
for everybody in the autistic community.
So pick the things that you'rehappy with and get them out there.
So thank you.
Thank you, thank you.
Thank you, from all of us.
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