August 26, 2025 • 41 mins
Ramon is an Autism Lead Officer with a wide portfolio of responsibilities
He is an ally to Neuro-divergent people and translates the Autistic experience and explains it for those who work as professionals in Autism.
Publication - Consultation analysis
Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis Search SearchLINK TO learning-disabilities-autism-neurodivergence-bill-consultation-analysis
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(00:00):
Spectrum-Voices-NEW-Autism-Legislation-Ramon-Hutchinson-Autism-Lead-Officer
(00:05):
=== Jules-AutisticRadio.com:
That's
the ground rules.
I'll try this with a introductionin a minute, Ramon, but just give us
(00:27):
a sense of what you think would beuseful to talk with us about today.
Ramon-Lead-Officer-for-Autism (00:31):
Oh, there's a lot I would like to talk about.
I've just read a letter of responseto the chair of the cross party group.
for autism, Alexander Burnett fromthe, the Minister for Social Care,
Mental Wellbeing and Sport, Marie Todd.
I'll expand on that , as we talk.
(00:51):
I think broadly speaking, , Ihope an informed discussion on
the previous Scottish Strategyfor Autism that ended in 2021.
After 10 years and the proposed, diversity bill proposal.
. And if you want to expand on that,then I'm perfectly willing to do so.
Jules-AutisticRadio.com (01:12):
Welcome back to another one of our
conversations here at autistic radio.
com.
The spectrum voices team, part ofautistic association, the entirely
independent autistic charity have.
The opportunity to speak todaywith one of our leaders in autism.
(01:38):
Autism leads exist in Scotland.
Ramon, Ramon Hutchinson.
Ramon has a, an actual personal linkto autism through his family, and we're
going to be asking about the politics.
I know one thing, and I know that therewas a 10 year strategy in Scotland that
(02:02):
was developed by lots of professionalsspending lots of taxpayers money.
And it got heavily criticized.
It looked like a 10 year gravytrain for me, because many of the
professionals just used it as an income.
And what it looks to me as anautistic person is very little
(02:25):
was achieved at the end of it.
Is that too challengingfor me to say that, Ramon?
Ramon-Lead-Officer-for-Autism: No, not at all. (02:31):
undefined
Jules-AutisticRadio.com (02:33):
What went wrong?
Ramon-Lead-Officer-for-Autism (02:37):
I think,
at risk of being overly, overlysimplistic, I think that we had a top down
strategy rather than a bottom up approach.
As you rightfully said,I mean, I think there
were a lot of, um, movers and shakers whowere involved, kind of higher levels, what
(02:58):
we would call the, the, the engineers.
Rather than the allies and the drivers,but the engineers who can set policy,
who think that they know what's best.
You know, they talk about the road tohell being paved with good intentions.
I think there were many good intentions.
underpinning the strategy.
It was
(03:21):
initially a proposal by an MSP whoactually comes from our authority.
I met her personally and she wasdoing her utmost to try and put
forward a strategy that would makesome impact and improve the lived and
living experience of our community.
But it didn't do so.
(03:41):
And I think it didn't do so because Therewas a lack of genuine collaboration.
Jules-AutisticRadio.com (03:48):
I saw some of the collaboration that was attempted.
I saw
A forum's created, and I saw consultationscreated, and they looked like, to me,
a justification for somebody's income.
(04:11):
It looked to me like a group of autisticpeople would be brought together, and
because that person had that group,that would give them some kind of
authority and justify their income.
Does that sound familiar?
Thank you.
Ramon-Lead-Officer-for-Autism: Yes, yes, if (04:29):
undefined
you know how passionately I feel aboutthe need for mandated or mandatory
duties as opposed to discretionary.
Powers, and I think that almostall of the Scottish strategy
for autism from 2011 to 2021
was predicated on the goodwill of thosewho deemed to, you know, provide services.
(04:55):
As you mentioned it, there wasn'tmandated duties that it was not a
right based approach, and I thinkit was a watering down of earlier
proposals to have a much more.
revolutionary kind of approachthrough, through legislation.
And I have fears that, you know, somethingsimilar might be happening as we speak.
(05:16):
So
Jules-AutisticRadio.com (05:18):
in simple terms, from my old fashion, looking at
television programs from the 1970s and80s, like Yes Minister, the intention
was there at the beginning, butthe status quo managed to quash it.
And people earned a goodliving in the meantime, yeah?
(05:38):
What's the new, what's the new improvedversion that's going forward now?
Different name, same people,same characters, same result?
Ramon-Lead-Officer-for-Autism (05:52):
I sincerely and passionately hope not so.
The LDAN, the Learning Disability, Autismand Neurodivergence Bill, I think has
taken a very, very detailed approach.
I think the civil service, who aresupporting the Scottish Government,
have ensured that the lived and livingexperience is being put front and
(06:18):
centre, and that, things like LEAPs,lived experience advisory panels, are
going to be, consulted, , Jules, I thinkthat What happened with the Eldan bill
is that it was extremely ambitious andit was so broad ranging and so detailed
I was reading something recently abook by Johan Harry About stolen focus
(06:43):
he was talking about and howsystems get crashed by you know,
people who want to infect it.
And it's a denial of services,
. The system is overwhelmed by information.
And I just have concerns that thisEldan Bill was similar to that.
It was so detailed and so broadranging that for a community
(07:04):
that already is laboring with.
a significant cognitive load tojust get by their everyday lives.
To then be presented withconsultation with 14 plus different
specialist areas to answer onwas just completely overwhelming.
It could have beenhugely, hugely simplified.
(07:24):
And as a consequence of that, Ireferred earlier to a ministerial
letter , to the chair of the cross party.
And one of the things that she said,, this is my words, no hers, , we want to
play for time until actually legislating.
Because not everybodyanswered all the questions.
Now, that wasn't the very guidancethat was provided for the community
(07:47):
for that very consultation.
It was specified that not every areawould affect every individual or every
organisation and they could select theones that would impinge on them directly.
Now the minister is saying, delaythis because not everybody answered
all the questions over a fourmonth consultation period, which
seems to me pretty contradictory.
Jules-AutisticRadio.com (08:09):
Well, I'll give you a personal anecdote.
I had every opportunity as anautistic person with intelligence
who has a platform here and who canspeak and string a few sentences
together to take part in the LDAN.
(08:29):
And I didn't.
I thought this just looks like one ofthose times where the lawyers collect
testimony after testimony and createfile after file and box after box of
information and then bury everybody in itso that nothing changes, nothing is simple
(08:57):
enough to change and it always looks likean intentional, purposeful thing to me.
Ramon-Lead-Officer-for-Autism: I can understand that. (09:03):
undefined
That's my great fear.
Yeah.
Yeah.
Jules-AutisticRadio.com: There's also something about the (09:09):
undefined
inappropriateness of, of reachingout to autistic people, isn't there?
Yeah.
How do we get a platform whichmakes it actually enabling for
(09:32):
the communication differences ofautistic people to be respected and
get the information out of them?
How do we change it?
Because at the moment,it's not accessible to me.
Absolutely.
Ramon-Lead-Officer-for-Autism (09:44):
Absolutely.
And I think that that's one of thereasons why I exist, is to try and be
an intermediary of some kind betweenthat complexity, that bureaucracy,
that strategic kind of overview, andtranslate that into understandable terms.
You're absolutely right.
You're absolutely right.
So, for example, Jules, withinthe analysis that was published by
(10:10):
Wellside Research after the fourmonth long consultation, after
a year's.
Earlier, pre consultation consultation,and a scoping exercise to hear what areas
needed to be looked at, and I think thereis great merit in many of the areas , but
I just think it was overload, as youmentioned, and I think it was far too
(10:34):
much to ask the community to answer on.
There were some simple premises thatcould have been distilled, , A rights
based approach based on some kind oflegislation that would enshrine the
rights of learning disabled, autisticand neurodivergent people to access
services and supports and to do thatthrough the formation of a commission.
(10:57):
or a commissioner.
Now, in, the consultation, two thirds ofeverybody who responded, 65%, said, yes,
we want a commissioner and yes, we wantunderpinning legislation to allow that
commission to have teeth to be what Idescribe as a watchdog, no another lapdog.
Essentially for me, that was thebig issue that should be emphasized.
(11:18):
But within the whole report, Jules, , itwas as though the 14 other areas of
inquiry and , the various comments, thevarious proportions of the population
about caveats and qualificationsand concerns and contradictions,
they were all overemphasized tothe detriment of the big issue, two
thirds of the community said we wantlegislation and we want a commissioner.
Maurice-ELAS-Autistic-Group: Can I share my experience of it? (11:40):
undefined
I certainly set a rights based approach.
I always, I always do.
I always put for things you're actuallytied to committally, , I actually said no
to a commissioner because commissioners,in my experience, commissioners decides
by themselves what they're goingto do and anything you raise they
Tell you it was not in their remit.
(12:01):
I don't see commissioners asaccountable enough, , , directly
participative lived experience boards.
, that's better if what you say getsinto the record where I can find
it again, but I'm wondering, willthey have the same problem as the
subgroups had in the strategy, whichwas, There was no mechanism to new
people to them as time went on later.
It was just the luck of who goton them right at the beginning.
(12:22):
They were then just nicelyseated on them permanently.
Jules-AutisticRadio.com (12:28):
That's a lack of access problem, isn't it?
People have already chosen thepuppets from the autistic community.
Some of those people that they thoughtwould be puppets have turned out to
be much more vocal than they expectedand They don't want more vocal
(12:53):
people to make it difficult, maybe
Yes, I think they try to addressthat by saying, well, what
would a commission look like?
Not just a commissioner, but a commission.
One of the merits of what they weretrying to do, outlining that, or what
(13:13):
shape that would take, is having livedexperience advisory people and lived
experience advisory panels, and you'reabsolutely right, you know, there
would need to be transparency from acommunity that would say, well, how
do, how do these people get appointed?
Are they appointees?
Or are they elected?
, what is the mandate that they haveto feed that information back?
(13:34):
To the community and hear whatthe community are saying and
have that constant feedback loop.
Now my understanding, obviouslyit's in the very early stages, is
it would be a commissioner who wouldbe advised by, , LEAP panels and
individuals drawn from the community.
, how are
they appointed or elected?
(13:56):
Over in the text, Raymond isusing the word Dissembling.
Confusing with detail.
Disguising.
So, that always comes around to the waythings are set up as consultations, as
(14:19):
forums, as panels, as advisory groups.
All of these different constructionsare all, in their essence, based on
neurotypical assumptions of communication.
So, all of them put autisticpeople at a disadvantage.
(14:39):
So what happens by the look of it is thata few people get to express some things,
but the whole framework generally is underthe control of people who have been well
paid to be there and they're obstructive.
Ramon-Lead-Officer-for-Autism (14:56):
I believe in the notion of champions,
and having locality based forums.
Now, we were promised that there wouldbe, after the demise of Autism Network
Scotland, which was the nationally,, established organization across Scotland
with the Scottish Strategy for Autism.
We were promised after itsdemise, that there would be
(15:19):
locality based forums established.
They've not yet happened.
They have never, , to the bestof my knowledge, transpired.
So locality based forums feed thatback and it's not yet happened.
So yes, dissembling is anexcellent word and very apt.
The detail and the broad scopeof this Eldang consultation that
(15:40):
has just been far too detailed.
That said, there are many, many areas,in fact, all areas that I agree with,
you know, in terms of the 14 areas, youknow, things that have never previously
been raised, like criminal justice,like the justice service, and the gross
over representation of our community.
And, you know, in that system, things likeadvocacy, albeit that it was very limited
(16:06):
to professional independent advocacy, youknow, there are other forms of advocacy
that I'd like to have seen, you know,given a better platform within that.
There's loads of things with loads ofareas within the LDAN consultation that
hold huge amount of merit, a commissionIt could then start examining in much more
detail without burdening the communityto answer each and every one of them.
Jules-AutisticRadio.com (16:27):
Yeah, repeating the whole stuff again and again, the
burden is what you're talking about.
I'm going to give you some insideinformation if you want, because when
you spoke about the tenure strategyand the Autism Network Scotland as
it used to be, it's been changed intosomething else by one of its directors.
(16:52):
That idea of creating forums.
started again and they reached outto restart a forum and I watched
it happen over two years that
(17:12):
the forum that they wanted toproduce to reach out to autistic
people of which I was a part wascontrolled by the professionals and
there was very little option for theautistic people to have much that
went anywhere after the discussions.
Also the way it was organizedwas in neurotypical lines.
(17:42):
And when we tried to describe a bettermodel and work on a better model, it
was appreciated and we worked the radiomodel and created that over a period of
time for use, and we were praised but Inthe background, those same professionals
were applying for funding for latediagnosed people that the group itself,
(18:09):
the autistic people themselves, havingcreated a charity, could have organized
themselves if they'd known about it.
They could have used the same fundingstream, but the people who were
reaching out to create the forums wereunwilling to share the information.
(18:30):
So it seems to me that the structureat the moment is built so that it's
not in the best interest of autismprofessionals to build constructive
partnerships with autistic organizations.
Ramon-Lead-Officer-for-Autism (18:46):
Yeah, After ANS came to an end and the Scottish
Government funding was withdrawn , thepeople who then were left for ANS started
their own kind of consultancy business.
No mandate from the community,partly as a business venture a
private consultancy business.
(19:06):
, Blake Sanderson, who were the commissionservice who reviewed the Scottish
strategy said, the Scottish strategy wasresponsible for stop start funding, that
there was this kind of awful situationwhere pots of money would become available
and organisations would then scurry totry and get access to those pots of money
(19:29):
and they would be funded for six monthsor a year, then come to an end and the
expertise and the experience that hadbeen amassed would be completely lost.
That's a major criticism for, onmy part, of the, , the issues that
we face in Scotland as an autismcommunity, , pockets of funding that
become available, it's almost like crumbs.
(19:49):
from the table of the, engineers whogive us these funding streams and
say, Oh, that's become available.
This has become available.
And then we have to scurryto try and access it.
And then after six monthsor a year, it's gone again.
So, you know, the supports are no builtupon the experiences, no continued,
(20:10):
there is no, there is no sustainability.
Jules-AutisticRadio.com (20:12):
Autism professionals, even if they have the
best will in the world, they're competingfor their income with the change that's
coming through, which is autistic peoplethemselves being the professionals,
creating the organizations and takingresponsibility closer to the grassroots,
(20:34):
all the things that people say is needed.
The major stopping block forthat is the competition between
autism professionals and autisticpeople over money and funding.
Ramon-Lead-Officer-for-Autism (20:50):
Yeah, and I think that a lot of that comes
back to things like credentializing,, the professionalization of the entire
system , it's only if you've got aPhD or a Master's or , some kinda
paper piece of paper that you arethe quote unquote expert on autism.
(21:11):
When the lived and living experienceis more valuable in most instances
, the kind of people with the paperqualifications, who in my experience
, many of them don't have a real graspon the lived and living experience.
So yeah, and I think that that'spart of the problem in the system
it's only if you have the quotesunquote legitimate qualifications.
(21:36):
From a quality assurance perspective,Jules, I can understand that there
must be safety one of the wayswe do that is to make sure that
people are suitably qualified.
But , I come back to my old chestnutof the allies, the drivers and the
professionals working collaboratively,, that communication, that collaboration,
(21:57):
that consultation, cooperation, andco production, mostly co production.
Actually democratizeit , let's co produce things.
And the issue for me about that is thatI have encountered many professionals
who that particular discourse,that particular community based
(22:18):
asset approach is anathema to them.
, we have to discover, connect, and mobilizewith the community, discover the issues
that the community has and, you know,connect them together as a community
and then mobilize them and, you know,
upskill them to addressthose things for themselves.
(22:41):
But I don't think we can do that in silos.
I don't think the alliescan do it themselves.
I don't think the drivers, which isthe autism community, the autistic
people themselves can do it themselves.
It needs to be in collaboration.
Jules-AutisticRadio.com (22:54):
I still want to make the statement that as I see
it from the outside at the moment.
Everything is built againstwhat you say happening.
The system is there to prevent that.
What people are saying in the chat here.
Harry brings up the point.
He says, The problem with anyconsultation is that it feels like a
(23:16):
talking shop without any further steps.
It's like talking into the abyss.
And Raymond says, Is there anyway we can work the bureaucracy?
Or are we, as agents, required to seek?
Self funded autonomy.
This is very like Europeansocial funding for representation
(23:40):
received by deprived communities.
Turn of the century, where as yousay, representatives and activists get
turned by the nature of the system.
So, I think he's saying really thatOnce you as an autistic person in an
autistic organisation get into thesystem, you find yourself so part of the
(24:04):
system that you're part of the problem.
Ramon-Lead-Officer-for-Autism: A poacher turned gamekeeper. (24:07):
undefined
Yeah, I think we need More autisticindividuals within the system itself.
I think we need more APOs, autisticpeople organizations when I was listening
to the comments, you know our communitySociologists have a wonderful term.
It's called MMU Multiply marginalizedand underrepresented and representation
(24:32):
matters we need representation at thevery core of the engineering organizations
, that's how we can stop the talking shop,, tokenistic, abyss looking, , processes.
Jules-AutisticRadio.com (24:47):
Well, we have a model here that isn't a forum that
makes up autistic people uncomfortablewhere text is as important as speech
and Where nobody who is autistichas to worry about being on camera
or all of those kind of things, andit's edited into a digestible format.
(25:10):
This is the forum, this audio forum,that could be so useful, if it
was taken up by the professionals.
But, it does, to some extent,call people to account, however
friendly I can come across, andthey don't want to account, do they?
Ramon-Lead-Officer-for-Autism: I think you're right. (25:30):
undefined
I think it causes discomfort.
I get huge pushback , When Ioffer awareness sessions, I'm
not a professional trainer,
I've worked as the coordinator here forten years and I'll offer the benefit
(25:50):
of the professional and personalexperience that I have when I convey
some of the things that you've alreadyexpressed Jules in those forums I get
accused of being political well I'm notpolitical you know if I am talking to
health professionals and saying that thebiomedical model is inherently deficient
(26:11):
and reductionist and unhelpful, andthat we need to look at a much more
holistic way, kind of biopsychosocial, the overarching discourse is that,
Autism is somehow a disease and it,and it's not, it's not a disease.
And when I, when I challengedthat, that paradigm, when I
challenged that discourse, I get
(26:35):
a lot of pushback for, andaccused of being political.
I think there is a politicalelement of forums like this.
And it should be because it's aboutinforming and upskilling and the truest
sense of the word, , radicalizing.
In a constructive way, the communityto be active participants, as opposed
to passive recipients, doffing the hatand thanking the professionals for,
(26:58):
, giving them crumbs off their table.
Maurice-ELAS-Autistic-Group (27:01):
Back in the
ANS forum in the last active phaseof its life, I made an issue of at
least trying to track to the extent ofresponse and take up to the issues we'd
raised were where did they reach in the.
professional world that hadn't been inthe original picture when it started.
Professor Dunlop has sort of imaginedit being professionals sort of casually
(27:25):
networking among themselves and chattingabout the things that came up with it,
but that hadn't left us with any definitepicture that we were achieving anything.
And so I raised that we needed one.
I don't know whether you thinkthat had any bad impact or the
whole thing coming to an end.
Jules-AutisticRadio.com (27:39):
Are you saying, Maurice, that Just simply asking
whether any of the things that you hadsaid at previous forums and meetings
had got anywhere Led people to thinkthat they no longer wanted to engage.
Yeah
Maurice-ELAS-Autistic-Group (27:55):
When you're looking at what things were happening
in the period leading up to when itgets a chop Well, that's one of them
Jules-AutisticRadio.com (28:01):
I think those forums stopped because the people who
could previously use them to make itlook as though they had A group of
autistic people in their back pocketand justify what they were doing
based on being informed by autisticpeople when they lost the value
(28:26):
of that forum for their own means.
There was limited amounts of timethat they were willing to put into
it, free of charge, without funding.
They carried on a bit with us, and weactually continued the forum and asked
them to keep coming to the meetings, butthey didn't turn up most of the time.
(28:46):
That's the
Maurice-ELAS-Autistic-Group (28:46):
merits of the efforts made after ants had been chopped.
That's slightly different to mypoint, which is about the government's
potential motives for chopping ants.
And I mean, uh, That, that, that,that, I meant leading up to that, and
the form is certainly still running.
Jules-AutisticRadio.com (29:04):
A new point from Raymond, based on what was said earlier.
If autism professionals are goingto profit from services, then
the service users themselves canalso piggyback and subvert the
services in the other direction.
They could hack the spacesavailable for more variant modes.
(29:29):
It always makes me think of the userand the dealer in the drug exchange.
Do you want to explainthat a bit more, Raymond?
Ray-AutisticRadio.com (29:41):
Just finding a way to be in that reciprocal relationship,
but in a way that is more open.
It's just a way thatI approach situations.
For example, this autistic radiocommunity is a very, very small
example of what I'm talking about.
Jules-AutisticRadio.com (29:53):
A way to be with
others
Ray-AutisticRadio.com (30:02):
in a conversation.
Now when we look at these otherconversations like we're hearing about
today and the experiences I've hadin the past with, you know, funding
for local communities, it can getvery frustrating and depressing.
Politically, socially, yousee people taking advantage.
You feel you can't get anywhere.
(30:24):
You wonder what to actually support.
You wonder about your own agency.
So at the ripe old age I am,I'm getting a wee bit tired of
all that and I just think like.
No, you've just got to figure outa more open way to create a space.
Now, how that then folds out into thegreater community, which is what I
(30:49):
think is being discussed, you know, uh.
A government led
set of proposals for managing society,then that's maybe a wee bit beyond me,
but I'm working from that ground level.
Jules-AutisticRadio.com (31:05):
And the other point that Raymond
makes is it's all political.
When you're being criticized forlooking at the wider picture,
people call it politics, butit's all political, Ramon, no?
So going forward, we've talked aboutthe failures of the past and we've
talked about trying not to repeat them.
(31:28):
What's the new thing?
What's going forward now?
Ramon-Lead-Officer-for-Autism: Well, I mean, I suppose the best way (31:31):
undefined
to outline that is to kind of outlinewhat the, the, in Wellside Research said
were recurring themes in the, you know,in the LDAN, the L D A N consultation.
(31:54):
Now, I don't agree with all of them, but,it might be useful to just hear them.
Number one, the need to include thosewith a lived and living experience, in
designing, delivering, and evaluatingany changes, strategies, and guidance.
Inclusive communication,training, or data collection.
(32:15):
Very worthy.
The need to, for the need for stafftraining, overwhelming both in learning
disabilities, autism, Neurodivergenceand around inclusive communication.
Number three, the need for accessiblecommunication and information to be
proactively provided and to go beyondeasy read options, which I entirely
agree with for the need for advocacysupport to be provided, to have
(32:41):
consistency and advocacy workers, andfor them to have appropriate learning
disability and neurodivergence training.
Five, the concern over funding, whichwe just touched on, and resource and
staffing, and how each of the proposalswould be delivered given the currently
stretched finances and staffingproblems across public sector services.
(33:01):
Nowhere does that say, , how thatsquare could be circled, or circle
could be squared, in terms ofusing the autistic community itself
to augment, to supplement that.
Six, the need for robustaccountability and real consequences
for services not delivering onlegal requirements or strategies.
(33:25):
Seven, the need for clarity around whatthe Eldan Bill sought to achieve that
was not covered by existing legislation.
So again, complexifying that, saying that there is lots of
legislation that already exists.
The Equalities Act, the Human Rights Act,
(33:48):
the United Nations Convention on theRights of People with Disabilities.
And the United Nations Convention onthe Rights of the Child, amongst others.
So, again, just, again, that, thatwhole complexification of things.
And then finally, the legislative change.
That legislative change maynot be the most appropriate way
to achieve desired proposals.
Now, that's what they said, that finalpoint, that legislative change may not
be the most appropriate way, becausethere had been doubts expressed.
(34:12):
, Later on, , in their own executivesummary, , they brought up the point and
say 65% Of everybody in the consultationsupported option one, create a new
commissioner, and that it must bepermitted to conduct formal investigations
and have enforcement powers, haveduties in the legislation rather than
just powers, and be responsible forcollecting data on outcomes, and have a
(34:34):
role in promoting and securing rights.
So, they contradict themselves , intheir own analysis, their own summary.
So that's the way forward.
That's what the proposal is.
, I think that the notion of having thelived and livered experience front
and centre to that is absolutely,the most important aspect of it.
(34:56):
Okay.
Jules-AutisticRadio.com: Can I just clarify there? (34:57):
undefined
Are you saying there's a contradictionbecause on the one hand they say that
it might be that there are enoughlaws in place at the moment without
changing the law and that we just needto apply the laws we already have in
a better framework and that is putagainst that you actually need to
(35:21):
change a law to create a commissioner?
Yeah.
Is that where the problem is?
Ramon-Lead-Officer-for-Autism: Yes, not for all, but for some who (35:26):
undefined
were involved in the consultation.
Yes, you put it very well, verysuccinctly, Jules, , we should
just use existing legislation morerobustly and fully as opposed to
creating new bits of legislation.
Personally, I don't think that's
Jules-AutisticRadio.com: That fits with me. (35:46):
undefined
I believe that all the laws are inthere, they're just not being followed.
I don't actually think wasting our time,spending money, changing laws, which
costs enormous amounts of money to changelaws, and it takes up everybody's time,
and that's where all the effort goesinto, when we just need to change the
(36:10):
framework and the way things are done.
We don't need moreconsultations, more law changes.
We need to use theinformation we already have.
You see, it's, to me, changing lawsjust looks like kicking everything down
the, down the road again, and saying,right, we're going through a process,
(36:30):
it's gonna take another ten years.
Ramon-Lead-Officer-for-Autism (36:32):
I can totally understand that, but I personally
believe that it's only through bespokelegislation that specifically addresses
all these issues that have been raisedin this consultation as it relates
to the learning disability, disabled,autistic and neurodivergent community.
You know, I think.
Everything else is much, muchmore diffuse, if that makes sense.
(36:56):
You know, I'll give you an example, Jules.
In relation to the mental health reform,that has been ongoing for the past
six or seven years, we had the RomeReview, which was a fully inclusive
consultation with the entire communityabout, Mental health legislation and
(37:16):
third sector organisations, individuals,all stakeholders and all, on all
areas fed back and overwhelmingly saidthat the mental health legislation
in Scotland was discriminatory, thatthe people who are autistic and who
have learned disabled were in the law.
Everybody, just because you'rediagnosed autistic, you are quote
(37:37):
unquote mentally disordered, as the lawpresently exists, was discriminatory
and against the UN Convention.
And then we had I'm
Jules-AutisticRadio.com: mentally disordered? (37:45):
undefined
Yes.
Sorry, I am mentally disordered?
Yes, as the legislation currently stands.
How dare the legislation describeme as mentally disordered?
Yes.
Ramon-Lead-Officer-for-Autism (37:56):
Yes.
Exactly.
Exactly.
Exactly.
How dare they?
And that's exactly how I feel about that.
And, and then we have the Scottreview, John Scott Casey, who's fed
back to the Scottish government,which has over 200 recommendations.
And it's just befuddled everything.
, there is a kind of tension between whatthe community has said unequivocally In
(38:19):
terms of reform and the need for reformto mental health legislation, and what,
, the professionals have said about that.
And, to me, it reads like, one wasbottom up and the other was top down.
Therein lies the contradiction.
It's only by empowering thecommunity, it's only by having a
rights based approach and a bespokepiece of legislation that's tailored
(38:41):
specifically for learning disabled,autistic and neurodivergent people
that we're going to move forward.
That those structural and systemicissues that have dogged our community for
forever will start to be addressed in away that's meaningful and not tokenistic.
Jules-AutisticRadio.com (38:58):
Wow.
I'm going to stop you at tokenisticbecause you don't, you know, your
didactic ending there is beautiful.
It is.
Is that okay?
Ramon-Lead-Officer-for-Autism (39:10):
Yes.
Jules-AutisticRadio.com (39:12):
Okay.
You get the last word there.
Wow.
Thank you.
Ramon.
I think you have summed that uprather beautifully and the people
listening, I think you've We've gotsome links in the program notes.
(39:35):
There is a consultation.
The consultation hashappened, but it continues.
The movement, the pressure, the need,the fight, the protest, the conversation,
the discussion, the openness.
The need to be heard andcommunicated continues.
(39:58):
So please, if you are one of thosepeople out there who feel that they
can add something to the debateand improve the situation, then
take every means you can to do so.
Here we are on autistic radiowith the autistic radio model.
So if people want tocreate a forum and really.
(40:19):
Have a full and opendiscussion in an easy way.
That's safe for both theprofessional and the autistic people.
Here we are.
We set it up for you.
Just come and join in.
Thank you, everybody.
Thank you, Ray.
Thank you, Harry.
Thank you, Morris.
And of course, thank you,Ramon, for speaking with us
today here on autistic radio.
(40:41):
Spectrum Voices Conversations is.
An Autistic Association sponsoredproduction for AutisticRadio.
com.
Thank you to the charityfor making this possible.
Spectrum-Voices-NEW-Autism-Legislation-Ramon-Hutchinson-Autism-Lead-Officer
(00:05):
=== Jules-AutisticRadio.com:
That's
the ground rules.
I'll try this with a introductionin a minute, Ramon, but just give us
(00:27):
a sense of what you think would beuseful to talk with us about today.
Ramon-Lead-Officer-for-Autism (00:31):
Oh, there's a lot I would like to talk about.
I've just read a letter of responseto the chair of the cross party group.
for autism, Alexander Burnett fromthe, the Minister for Social Care,
Mental Wellbeing and Sport, Marie Todd.
I'll expand on that , as we talk.
(00:51):
I think broadly speaking, , Ihope an informed discussion on
the previous Scottish Strategyfor Autism that ended in 2021.
After 10 years and the proposed, diversity bill proposal.
. And if you want to expand on that,then I'm perfectly willing to do so.
Jules-AutisticRadio.com (01:12):
Welcome back to another one of our
conversations here at autistic radio.
com.
The spectrum voices team, part ofautistic association, the entirely
independent autistic charity have.
The opportunity to speak todaywith one of our leaders in autism.
(01:38):
Autism leads exist in Scotland.
Ramon, Ramon Hutchinson.
Ramon has a, an actual personal linkto autism through his family, and we're
going to be asking about the politics.
I know one thing, and I know that therewas a 10 year strategy in Scotland that
(02:02):
was developed by lots of professionalsspending lots of taxpayers money.
And it got heavily criticized.
It looked like a 10 year gravytrain for me, because many of the
professionals just used it as an income.
And what it looks to me as anautistic person is very little
(02:25):
was achieved at the end of it.
Is that too challengingfor me to say that, Ramon?
Ramon-Lead-Officer-for-Autism: No, not at all. (02:31):
undefined
Jules-AutisticRadio.com (02:33):
What went wrong?
Ramon-Lead-Officer-for-Autism (02:37):
I think,
at risk of being overly, overlysimplistic, I think that we had a top down
strategy rather than a bottom up approach.
As you rightfully said,I mean, I think there
were a lot of, um, movers and shakers whowere involved, kind of higher levels, what
(02:58):
we would call the, the, the engineers.
Rather than the allies and the drivers,but the engineers who can set policy,
who think that they know what's best.
You know, they talk about the road tohell being paved with good intentions.
I think there were many good intentions.
underpinning the strategy.
It was
(03:21):
initially a proposal by an MSP whoactually comes from our authority.
I met her personally and she wasdoing her utmost to try and put
forward a strategy that would makesome impact and improve the lived and
living experience of our community.
But it didn't do so.
(03:41):
And I think it didn't do so because Therewas a lack of genuine collaboration.
Jules-AutisticRadio.com (03:48):
I saw some of the collaboration that was attempted.
I saw
A forum's created, and I saw consultationscreated, and they looked like, to me,
a justification for somebody's income.
(04:11):
It looked to me like a group of autisticpeople would be brought together, and
because that person had that group,that would give them some kind of
authority and justify their income.
Does that sound familiar?
Thank you.
Ramon-Lead-Officer-for-Autism: Yes, yes, if (04:29):
undefined
you know how passionately I feel aboutthe need for mandated or mandatory
duties as opposed to discretionary.
Powers, and I think that almostall of the Scottish strategy
for autism from 2011 to 2021
was predicated on the goodwill of thosewho deemed to, you know, provide services.
(04:55):
As you mentioned it, there wasn'tmandated duties that it was not a
right based approach, and I thinkit was a watering down of earlier
proposals to have a much more.
revolutionary kind of approachthrough, through legislation.
And I have fears that, you know, somethingsimilar might be happening as we speak.
(05:16):
So
Jules-AutisticRadio.com (05:18):
in simple terms, from my old fashion, looking at
television programs from the 1970s and80s, like Yes Minister, the intention
was there at the beginning, butthe status quo managed to quash it.
And people earned a goodliving in the meantime, yeah?
(05:38):
What's the new, what's the new improvedversion that's going forward now?
Different name, same people,same characters, same result?
Ramon-Lead-Officer-for-Autism (05:52):
I sincerely and passionately hope not so.
The LDAN, the Learning Disability, Autismand Neurodivergence Bill, I think has
taken a very, very detailed approach.
I think the civil service, who aresupporting the Scottish Government,
have ensured that the lived and livingexperience is being put front and
(06:18):
centre, and that, things like LEAPs,lived experience advisory panels, are
going to be, consulted, , Jules, I thinkthat What happened with the Eldan bill
is that it was extremely ambitious andit was so broad ranging and so detailed
I was reading something recently abook by Johan Harry About stolen focus
(06:43):
he was talking about and howsystems get crashed by you know,
people who want to infect it.
And it's a denial of services,
. The system is overwhelmed by information.
And I just have concerns that thisEldan Bill was similar to that.
It was so detailed and so broadranging that for a community
(07:04):
that already is laboring with.
a significant cognitive load tojust get by their everyday lives.
To then be presented withconsultation with 14 plus different
specialist areas to answer onwas just completely overwhelming.
It could have beenhugely, hugely simplified.
(07:24):
And as a consequence of that, Ireferred earlier to a ministerial
letter , to the chair of the cross party.
And one of the things that she said,, this is my words, no hers, , we want to
play for time until actually legislating.
Because not everybodyanswered all the questions.
Now, that wasn't the very guidancethat was provided for the community
(07:47):
for that very consultation.
It was specified that not every areawould affect every individual or every
organisation and they could select theones that would impinge on them directly.
Now the minister is saying, delaythis because not everybody answered
all the questions over a fourmonth consultation period, which
seems to me pretty contradictory.
Jules-AutisticRadio.com (08:09):
Well, I'll give you a personal anecdote.
I had every opportunity as anautistic person with intelligence
who has a platform here and who canspeak and string a few sentences
together to take part in the LDAN.
(08:29):
And I didn't.
I thought this just looks like one ofthose times where the lawyers collect
testimony after testimony and createfile after file and box after box of
information and then bury everybody in itso that nothing changes, nothing is simple
(08:57):
enough to change and it always looks likean intentional, purposeful thing to me.
Ramon-Lead-Officer-for-Autism: I can understand that. (09:03):
undefined
That's my great fear.
Yeah.
Yeah.
Jules-AutisticRadio.com: There's also something about the (09:09):
undefined
inappropriateness of, of reachingout to autistic people, isn't there?
Yeah.
How do we get a platform whichmakes it actually enabling for
(09:32):
the communication differences ofautistic people to be respected and
get the information out of them?
How do we change it?
Because at the moment,it's not accessible to me.
Absolutely.
Ramon-Lead-Officer-for-Autism (09:44):
Absolutely.
And I think that that's one of thereasons why I exist, is to try and be
an intermediary of some kind betweenthat complexity, that bureaucracy,
that strategic kind of overview, andtranslate that into understandable terms.
You're absolutely right.
You're absolutely right.
So, for example, Jules, withinthe analysis that was published by
(10:10):
Wellside Research after the fourmonth long consultation, after
a year's.
Earlier, pre consultation consultation,and a scoping exercise to hear what areas
needed to be looked at, and I think thereis great merit in many of the areas , but
I just think it was overload, as youmentioned, and I think it was far too
(10:34):
much to ask the community to answer on.
There were some simple premises thatcould have been distilled, , A rights
based approach based on some kind oflegislation that would enshrine the
rights of learning disabled, autisticand neurodivergent people to access
services and supports and to do thatthrough the formation of a commission.
(10:57):
or a commissioner.
Now, in, the consultation, two thirds ofeverybody who responded, 65%, said, yes,
we want a commissioner and yes, we wantunderpinning legislation to allow that
commission to have teeth to be what Idescribe as a watchdog, no another lapdog.
Essentially for me, that was thebig issue that should be emphasized.
(11:18):
But within the whole report, Jules, , itwas as though the 14 other areas of
inquiry and , the various comments, thevarious proportions of the population
about caveats and qualificationsand concerns and contradictions,
they were all overemphasized tothe detriment of the big issue, two
thirds of the community said we wantlegislation and we want a commissioner.
Maurice-ELAS-Autistic-Group: Can I share my experience of it? (11:40):
undefined
I certainly set a rights based approach.
I always, I always do.
I always put for things you're actuallytied to committally, , I actually said no
to a commissioner because commissioners,in my experience, commissioners decides
by themselves what they're goingto do and anything you raise they
Tell you it was not in their remit.
(12:01):
I don't see commissioners asaccountable enough, , , directly
participative lived experience boards.
, that's better if what you say getsinto the record where I can find
it again, but I'm wondering, willthey have the same problem as the
subgroups had in the strategy, whichwas, There was no mechanism to new
people to them as time went on later.
It was just the luck of who goton them right at the beginning.
(12:22):
They were then just nicelyseated on them permanently.
Jules-AutisticRadio.com (12:28):
That's a lack of access problem, isn't it?
People have already chosen thepuppets from the autistic community.
Some of those people that they thoughtwould be puppets have turned out to
be much more vocal than they expectedand They don't want more vocal
(12:53):
people to make it difficult, maybe
Yes, I think they try to addressthat by saying, well, what
would a commission look like?
Not just a commissioner, but a commission.
One of the merits of what they weretrying to do, outlining that, or what
(13:13):
shape that would take, is having livedexperience advisory people and lived
experience advisory panels, and you'reabsolutely right, you know, there
would need to be transparency from acommunity that would say, well, how
do, how do these people get appointed?
Are they appointees?
Or are they elected?
, what is the mandate that they haveto feed that information back?
(13:34):
To the community and hear whatthe community are saying and
have that constant feedback loop.
Now my understanding, obviouslyit's in the very early stages, is
it would be a commissioner who wouldbe advised by, , LEAP panels and
individuals drawn from the community.
, how are
they appointed or elected?
(13:56):
Over in the text, Raymond isusing the word Dissembling.
Confusing with detail.
Disguising.
So, that always comes around to the waythings are set up as consultations, as
(14:19):
forums, as panels, as advisory groups.
All of these different constructionsare all, in their essence, based on
neurotypical assumptions of communication.
So, all of them put autisticpeople at a disadvantage.
(14:39):
So what happens by the look of it is thata few people get to express some things,
but the whole framework generally is underthe control of people who have been well
paid to be there and they're obstructive.
Ramon-Lead-Officer-for-Autism (14:56):
I believe in the notion of champions,
and having locality based forums.
Now, we were promised that there wouldbe, after the demise of Autism Network
Scotland, which was the nationally,, established organization across Scotland
with the Scottish Strategy for Autism.
We were promised after itsdemise, that there would be
(15:19):
locality based forums established.
They've not yet happened.
They have never, , to the bestof my knowledge, transpired.
So locality based forums feed thatback and it's not yet happened.
So yes, dissembling is anexcellent word and very apt.
The detail and the broad scopeof this Eldang consultation that
(15:40):
has just been far too detailed.
That said, there are many, many areas,in fact, all areas that I agree with,
you know, in terms of the 14 areas, youknow, things that have never previously
been raised, like criminal justice,like the justice service, and the gross
over representation of our community.
And, you know, in that system, things likeadvocacy, albeit that it was very limited
(16:06):
to professional independent advocacy, youknow, there are other forms of advocacy
that I'd like to have seen, you know,given a better platform within that.
There's loads of things with loads ofareas within the LDAN consultation that
hold huge amount of merit, a commissionIt could then start examining in much more
detail without burdening the communityto answer each and every one of them.
Jules-AutisticRadio.com (16:27):
Yeah, repeating the whole stuff again and again, the
burden is what you're talking about.
I'm going to give you some insideinformation if you want, because when
you spoke about the tenure strategyand the Autism Network Scotland as
it used to be, it's been changed intosomething else by one of its directors.
(16:52):
That idea of creating forums.
started again and they reached outto restart a forum and I watched
it happen over two years that
(17:12):
the forum that they wanted toproduce to reach out to autistic
people of which I was a part wascontrolled by the professionals and
there was very little option for theautistic people to have much that
went anywhere after the discussions.
Also the way it was organizedwas in neurotypical lines.
(17:42):
And when we tried to describe a bettermodel and work on a better model, it
was appreciated and we worked the radiomodel and created that over a period of
time for use, and we were praised but Inthe background, those same professionals
were applying for funding for latediagnosed people that the group itself,
(18:09):
the autistic people themselves, havingcreated a charity, could have organized
themselves if they'd known about it.
They could have used the same fundingstream, but the people who were
reaching out to create the forums wereunwilling to share the information.
(18:30):
So it seems to me that the structureat the moment is built so that it's
not in the best interest of autismprofessionals to build constructive
partnerships with autistic organizations.
Ramon-Lead-Officer-for-Autism (18:46):
Yeah, After ANS came to an end and the Scottish
Government funding was withdrawn , thepeople who then were left for ANS started
their own kind of consultancy business.
No mandate from the community,partly as a business venture a
private consultancy business.
(19:06):
, Blake Sanderson, who were the commissionservice who reviewed the Scottish
strategy said, the Scottish strategy wasresponsible for stop start funding, that
there was this kind of awful situationwhere pots of money would become available
and organisations would then scurry totry and get access to those pots of money
(19:29):
and they would be funded for six monthsor a year, then come to an end and the
expertise and the experience that hadbeen amassed would be completely lost.
That's a major criticism for, onmy part, of the, , the issues that
we face in Scotland as an autismcommunity, , pockets of funding that
become available, it's almost like crumbs.
(19:49):
from the table of the, engineers whogive us these funding streams and
say, Oh, that's become available.
This has become available.
And then we have to scurryto try and access it.
And then after six monthsor a year, it's gone again.
So, you know, the supports are no builtupon the experiences, no continued,
(20:10):
there is no, there is no sustainability.
Jules-AutisticRadio.com (20:12):
Autism professionals, even if they have the
best will in the world, they're competingfor their income with the change that's
coming through, which is autistic peoplethemselves being the professionals,
creating the organizations and takingresponsibility closer to the grassroots,
(20:34):
all the things that people say is needed.
The major stopping block forthat is the competition between
autism professionals and autisticpeople over money and funding.
Ramon-Lead-Officer-for-Autism (20:50):
Yeah, and I think that a lot of that comes
back to things like credentializing,, the professionalization of the entire
system , it's only if you've got aPhD or a Master's or , some kinda
paper piece of paper that you arethe quote unquote expert on autism.
(21:11):
When the lived and living experienceis more valuable in most instances
, the kind of people with the paperqualifications, who in my experience
, many of them don't have a real graspon the lived and living experience.
So yeah, and I think that that'spart of the problem in the system
it's only if you have the quotesunquote legitimate qualifications.
(21:36):
From a quality assurance perspective,Jules, I can understand that there
must be safety one of the wayswe do that is to make sure that
people are suitably qualified.
But , I come back to my old chestnutof the allies, the drivers and the
professionals working collaboratively,, that communication, that collaboration,
(21:57):
that consultation, cooperation, andco production, mostly co production.
Actually democratizeit , let's co produce things.
And the issue for me about that is thatI have encountered many professionals
who that particular discourse,that particular community based
(22:18):
asset approach is anathema to them.
, we have to discover, connect, and mobilizewith the community, discover the issues
that the community has and, you know,connect them together as a community
and then mobilize them and, you know,
upskill them to addressthose things for themselves.
(22:41):
But I don't think we can do that in silos.
I don't think the alliescan do it themselves.
I don't think the drivers, which isthe autism community, the autistic
people themselves can do it themselves.
It needs to be in collaboration.
Jules-AutisticRadio.com (22:54):
I still want to make the statement that as I see
it from the outside at the moment.
Everything is built againstwhat you say happening.
The system is there to prevent that.
What people are saying in the chat here.
Harry brings up the point.
He says, The problem with anyconsultation is that it feels like a
(23:16):
talking shop without any further steps.
It's like talking into the abyss.
And Raymond says, Is there anyway we can work the bureaucracy?
Or are we, as agents, required to seek?
Self funded autonomy.
This is very like Europeansocial funding for representation
(23:40):
received by deprived communities.
Turn of the century, where as yousay, representatives and activists get
turned by the nature of the system.
So, I think he's saying really thatOnce you as an autistic person in an
autistic organisation get into thesystem, you find yourself so part of the
(24:04):
system that you're part of the problem.
Ramon-Lead-Officer-for-Autism: A poacher turned gamekeeper. (24:07):
undefined
Yeah, I think we need More autisticindividuals within the system itself.
I think we need more APOs, autisticpeople organizations when I was listening
to the comments, you know our communitySociologists have a wonderful term.
It's called MMU Multiply marginalizedand underrepresented and representation
(24:32):
matters we need representation at thevery core of the engineering organizations
, that's how we can stop the talking shop,, tokenistic, abyss looking, , processes.
Jules-AutisticRadio.com (24:47):
Well, we have a model here that isn't a forum that
makes up autistic people uncomfortablewhere text is as important as speech
and Where nobody who is autistichas to worry about being on camera
or all of those kind of things, andit's edited into a digestible format.
(25:10):
This is the forum, this audio forum,that could be so useful, if it
was taken up by the professionals.
But, it does, to some extent,call people to account, however
friendly I can come across, andthey don't want to account, do they?
Ramon-Lead-Officer-for-Autism: I think you're right. (25:30):
undefined
I think it causes discomfort.
I get huge pushback , When Ioffer awareness sessions, I'm
not a professional trainer,
I've worked as the coordinator here forten years and I'll offer the benefit
(25:50):
of the professional and personalexperience that I have when I convey
some of the things that you've alreadyexpressed Jules in those forums I get
accused of being political well I'm notpolitical you know if I am talking to
health professionals and saying that thebiomedical model is inherently deficient
(26:11):
and reductionist and unhelpful, andthat we need to look at a much more
holistic way, kind of biopsychosocial, the overarching discourse is that,
Autism is somehow a disease and it,and it's not, it's not a disease.
And when I, when I challengedthat, that paradigm, when I
challenged that discourse, I get
(26:35):
a lot of pushback for, andaccused of being political.
I think there is a politicalelement of forums like this.
And it should be because it's aboutinforming and upskilling and the truest
sense of the word, , radicalizing.
In a constructive way, the communityto be active participants, as opposed
to passive recipients, doffing the hatand thanking the professionals for,
(26:58):
, giving them crumbs off their table.
Maurice-ELAS-Autistic-Group (27:01):
Back in the
ANS forum in the last active phaseof its life, I made an issue of at
least trying to track to the extent ofresponse and take up to the issues we'd
raised were where did they reach in the.
professional world that hadn't been inthe original picture when it started.
Professor Dunlop has sort of imaginedit being professionals sort of casually
(27:25):
networking among themselves and chattingabout the things that came up with it,
but that hadn't left us with any definitepicture that we were achieving anything.
And so I raised that we needed one.
I don't know whether you thinkthat had any bad impact or the
whole thing coming to an end.
Jules-AutisticRadio.com (27:39):
Are you saying, Maurice, that Just simply asking
whether any of the things that you hadsaid at previous forums and meetings
had got anywhere Led people to thinkthat they no longer wanted to engage.
Yeah
Maurice-ELAS-Autistic-Group (27:55):
When you're looking at what things were happening
in the period leading up to when itgets a chop Well, that's one of them
Jules-AutisticRadio.com (28:01):
I think those forums stopped because the people who
could previously use them to make itlook as though they had A group of
autistic people in their back pocketand justify what they were doing
based on being informed by autisticpeople when they lost the value
(28:26):
of that forum for their own means.
There was limited amounts of timethat they were willing to put into
it, free of charge, without funding.
They carried on a bit with us, and weactually continued the forum and asked
them to keep coming to the meetings, butthey didn't turn up most of the time.
(28:46):
That's the
Maurice-ELAS-Autistic-Group (28:46):
merits of the efforts made after ants had been chopped.
That's slightly different to mypoint, which is about the government's
potential motives for chopping ants.
And I mean, uh, That, that, that,that, I meant leading up to that, and
the form is certainly still running.
Jules-AutisticRadio.com (29:04):
A new point from Raymond, based on what was said earlier.
If autism professionals are goingto profit from services, then
the service users themselves canalso piggyback and subvert the
services in the other direction.
They could hack the spacesavailable for more variant modes.
(29:29):
It always makes me think of the userand the dealer in the drug exchange.
Do you want to explainthat a bit more, Raymond?
Ray-AutisticRadio.com (29:41):
Just finding a way to be in that reciprocal relationship,
but in a way that is more open.
It's just a way thatI approach situations.
For example, this autistic radiocommunity is a very, very small
example of what I'm talking about.
Jules-AutisticRadio.com (29:53):
A way to be with
others
Ray-AutisticRadio.com (30:02):
in a conversation.
Now when we look at these otherconversations like we're hearing about
today and the experiences I've hadin the past with, you know, funding
for local communities, it can getvery frustrating and depressing.
Politically, socially, yousee people taking advantage.
You feel you can't get anywhere.
(30:24):
You wonder what to actually support.
You wonder about your own agency.
So at the ripe old age I am,I'm getting a wee bit tired of
all that and I just think like.
No, you've just got to figure outa more open way to create a space.
Now, how that then folds out into thegreater community, which is what I
(30:49):
think is being discussed, you know, uh.
A government led
set of proposals for managing society,then that's maybe a wee bit beyond me,
but I'm working from that ground level.
Jules-AutisticRadio.com (31:05):
And the other point that Raymond
makes is it's all political.
When you're being criticized forlooking at the wider picture,
people call it politics, butit's all political, Ramon, no?
So going forward, we've talked aboutthe failures of the past and we've
talked about trying not to repeat them.
(31:28):
What's the new thing?
What's going forward now?
Ramon-Lead-Officer-for-Autism: Well, I mean, I suppose the best way (31:31):
undefined
to outline that is to kind of outlinewhat the, the, in Wellside Research said
were recurring themes in the, you know,in the LDAN, the L D A N consultation.
(31:54):
Now, I don't agree with all of them, but,it might be useful to just hear them.
Number one, the need to include thosewith a lived and living experience, in
designing, delivering, and evaluatingany changes, strategies, and guidance.
Inclusive communication,training, or data collection.
(32:15):
Very worthy.
The need to, for the need for stafftraining, overwhelming both in learning
disabilities, autism, Neurodivergenceand around inclusive communication.
Number three, the need for accessiblecommunication and information to be
proactively provided and to go beyondeasy read options, which I entirely
agree with for the need for advocacysupport to be provided, to have
(32:41):
consistency and advocacy workers, andfor them to have appropriate learning
disability and neurodivergence training.
Five, the concern over funding, whichwe just touched on, and resource and
staffing, and how each of the proposalswould be delivered given the currently
stretched finances and staffingproblems across public sector services.
(33:01):
Nowhere does that say, , how thatsquare could be circled, or circle
could be squared, in terms ofusing the autistic community itself
to augment, to supplement that.
Six, the need for robustaccountability and real consequences
for services not delivering onlegal requirements or strategies.
(33:25):
Seven, the need for clarity around whatthe Eldan Bill sought to achieve that
was not covered by existing legislation.
So again, complexifying that, saying that there is lots of
legislation that already exists.
The Equalities Act, the Human Rights Act,
(33:48):
the United Nations Convention on theRights of People with Disabilities.
And the United Nations Convention onthe Rights of the Child, amongst others.
So, again, just, again, that, thatwhole complexification of things.
And then finally, the legislative change.
That legislative change maynot be the most appropriate way
to achieve desired proposals.
Now, that's what they said, that finalpoint, that legislative change may not
be the most appropriate way, becausethere had been doubts expressed.
(34:12):
, Later on, , in their own executivesummary, , they brought up the point and
say 65% Of everybody in the consultationsupported option one, create a new
commissioner, and that it must bepermitted to conduct formal investigations
and have enforcement powers, haveduties in the legislation rather than
just powers, and be responsible forcollecting data on outcomes, and have a
(34:34):
role in promoting and securing rights.
So, they contradict themselves , intheir own analysis, their own summary.
So that's the way forward.
That's what the proposal is.
, I think that the notion of having thelived and livered experience front
and centre to that is absolutely,the most important aspect of it.
(34:56):
Okay.
Jules-AutisticRadio.com: Can I just clarify there? (34:57):
undefined
Are you saying there's a contradictionbecause on the one hand they say that
it might be that there are enoughlaws in place at the moment without
changing the law and that we just needto apply the laws we already have in
a better framework and that is putagainst that you actually need to
(35:21):
change a law to create a commissioner?
Yeah.
Is that where the problem is?
Ramon-Lead-Officer-for-Autism: Yes, not for all, but for some who (35:26):
undefined
were involved in the consultation.
Yes, you put it very well, verysuccinctly, Jules, , we should
just use existing legislation morerobustly and fully as opposed to
creating new bits of legislation.
Personally, I don't think that's
Jules-AutisticRadio.com: That fits with me. (35:46):
undefined
I believe that all the laws are inthere, they're just not being followed.
I don't actually think wasting our time,spending money, changing laws, which
costs enormous amounts of money to changelaws, and it takes up everybody's time,
and that's where all the effort goesinto, when we just need to change the
(36:10):
framework and the way things are done.
We don't need moreconsultations, more law changes.
We need to use theinformation we already have.
You see, it's, to me, changing lawsjust looks like kicking everything down
the, down the road again, and saying,right, we're going through a process,
(36:30):
it's gonna take another ten years.
Ramon-Lead-Officer-for-Autism (36:32):
I can totally understand that, but I personally
believe that it's only through bespokelegislation that specifically addresses
all these issues that have been raisedin this consultation as it relates
to the learning disability, disabled,autistic and neurodivergent community.
You know, I think.
Everything else is much, muchmore diffuse, if that makes sense.
(36:56):
You know, I'll give you an example, Jules.
In relation to the mental health reform,that has been ongoing for the past
six or seven years, we had the RomeReview, which was a fully inclusive
consultation with the entire communityabout, Mental health legislation and
(37:16):
third sector organisations, individuals,all stakeholders and all, on all
areas fed back and overwhelmingly saidthat the mental health legislation
in Scotland was discriminatory, thatthe people who are autistic and who
have learned disabled were in the law.
Everybody, just because you'rediagnosed autistic, you are quote
(37:37):
unquote mentally disordered, as the lawpresently exists, was discriminatory
and against the UN Convention.
And then we had I'm
Jules-AutisticRadio.com: mentally disordered? (37:45):
undefined
Yes.
Sorry, I am mentally disordered?
Yes, as the legislation currently stands.
How dare the legislation describeme as mentally disordered?
Yes.
Ramon-Lead-Officer-for-Autism (37:56):
Yes.
Exactly.
Exactly.
Exactly.
How dare they?
And that's exactly how I feel about that.
And, and then we have the Scottreview, John Scott Casey, who's fed
back to the Scottish government,which has over 200 recommendations.
And it's just befuddled everything.
, there is a kind of tension between whatthe community has said unequivocally In
(38:19):
terms of reform and the need for reformto mental health legislation, and what,
, the professionals have said about that.
And, to me, it reads like, one wasbottom up and the other was top down.
Therein lies the contradiction.
It's only by empowering thecommunity, it's only by having a
rights based approach and a bespokepiece of legislation that's tailored
(38:41):
specifically for learning disabled,autistic and neurodivergent people
that we're going to move forward.
That those structural and systemicissues that have dogged our community for
forever will start to be addressed in away that's meaningful and not tokenistic.
Jules-AutisticRadio.com (38:58):
Wow.
I'm going to stop you at tokenisticbecause you don't, you know, your
didactic ending there is beautiful.
It is.
Is that okay?
Ramon-Lead-Officer-for-Autism (39:10):
Yes.
Jules-AutisticRadio.com (39:12):
Okay.
You get the last word there.
Wow.
Thank you.
Ramon.
I think you have summed that uprather beautifully and the people
listening, I think you've We've gotsome links in the program notes.
(39:35):
There is a consultation.
The consultation hashappened, but it continues.
The movement, the pressure, the need,the fight, the protest, the conversation,
the discussion, the openness.
The need to be heard andcommunicated continues.
(39:58):
So please, if you are one of thosepeople out there who feel that they
can add something to the debateand improve the situation, then
take every means you can to do so.
Here we are on autistic radiowith the autistic radio model.
So if people want tocreate a forum and really.
(40:19):
Have a full and opendiscussion in an easy way.
That's safe for both theprofessional and the autistic people.
Here we are.
We set it up for you.
Just come and join in.
Thank you, everybody.
Thank you, Ray.
Thank you, Harry.
Thank you, Morris.
And of course, thank you,Ramon, for speaking with us
today here on autistic radio.
(40:41):
Spectrum Voices Conversations is.
An Autistic Association sponsoredproduction for AutisticRadio.
com.
Thank you to the charityfor making this possible.
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