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Report transcript in: Nonnie shares their experiences of autism, and the care and support he has recieved over the years.
Please Report the Errrors?
too fast.
Depressed? Yeah. Yeah, I think so. You have to.
It's an inbuilt consent function.
I'm just so you know, on the recording,
I've just pinned you to my screen so my voice will be heard,
But it won't It won't do that jumpy about things
from face to face so high I now need You just want to introduce yourself. Hi.
I'm Nani Pippen.
And yeah,
a 40 year old dad of five. There you go.
Yeah. Number and non binary, obviously. Yeah. Brilliant.
And just want to tell me a little bit
about your experience of the care and support system.
And you know how you've been part of that?
Firstly, to say, the NHS are brilliant, and what they do is absolutely perfect.
It's not not in any way
disparaging on them,
but yeah, I felt I found being a 13 year old boy was quite challenging
and emotional and lots of anxiety, which then later went at 19.
I think that became quite depression related.
So I got picked up by NHS GPS to start with between the ages of 19 and 30.
I was mainly going to the GP. Um,
there was some counselling involved.
And that was all focused around family life and
upbringing.
And then, I think later life. So I got a diagnosis in 2015 for O. C. D.
Obsessive compulsive disorder related to the cognitive sites.
So to do with obsessive thoughts, uh, obsessive ruminations,
tragic,
tragic stuff that was going around my mind that was really making me unhappy.
And then
2017, I got picked up with definite, definite Asperger's syndrome,
which is now part of autistic spectrum
disorder
or condition. I'm not sure it's hard to know sometimes, isn't it? What?
What difference did that make to you, Nani
having that
sort of insight or diagnosis or found it
interesting that there was that two year gap?
Because the discussion really started at
that meeting with the consultant psychiatrist
in 2015 when I just looked him in the face and when
I really can't understand what people are thinking, I can't read their faces,
and that was that was a light bulb moment.
Really, something is different about the way that I think,
Yeah,
I still got tied up with
the Norfolk Suffolk Foundation Trust
Mental Health Community Team
and also the residential team as well. For quite a time,
Yeah, in and out of hospitals. Um, summer. Any hospitals?
Some mental health hospitals,
Like scary times. Quite scary experiences of what I came across.
Things like being attacked and being treated like I was, you know,
a very ill patient at times and being treated like I was a bit of a time waster at times.
So,
yeah, that was quite hard when they said, Just don't complicate things.
Don't explain it.
Just so you've got a mental health condition and we refer you
to the uncle Mental health team and they'll send you home.
So So, how did you end up being, um, in hospital for the first time?
And I will just say before going further if there's anything you don't want to? Yeah.
So careful how I phrase it, I was I was not really making attempts on my life.
I was more doing a cry for help.
So microfiber helps were on the line.
So I would sit on the platform of a train station or I'd lie in the road.
Not really definitely making any attempts,
just being really risky and trying to get the attention of the NHS.
Um, in 2021
22 that became a lot more problematic because that was
to do with phone calls to the 999 numbers.
Um, I was following a very autistic pattern of what was in my safety plan,
which was to call my appointed worker, who would who would not answer it,
go to voicemail
to call the duty team. Who would tell me to not to not bother them?
That was that wasn't that wasn't having a crisis to call the crisis team.
I follow this pattern quite rigidly
and then to call the 111 service who would do the 999 call usually.
But if they were too busy, I would make the nine.
And I call myself so spending a lot of time with paramedics
and ambulance drivers over fears of having heart attacks of having cancer,
brain tumours, Everything was in my head about what was making me so ill.
Yeah, yeah.
And
so, yeah, I mean, that
that just makes so much sense in many ways.
And so did you end up? Did you?
So you're you're in and out of hospital because of that fear of visits in one week.
I think I attended hospital seven times.
That was that was the worst. And then I got referred to a high intense to use the team.
Who said I was above their level?
Is that as in a and A
as in any records, Every instance that you're there If you're there a lot of times,
then they refer it.
Um,
lovely chapter I spoke to said he was one of eight people in the
county and the county of East Anglia that could actually take on people.
And and at the point when I was still calling the police ambulance, um,
Coast Guard crumbs.
I know I know them all personally.
People like Christian and Paul and others that I've got to know personally Richard,
who immediately recognised me.
Even though we're in a completely foreign location,
I think we're just We just met in the woods when
he sent about six or seven police cars and an ambulance
well,
and
what was so what was the role of that person,
then from that high intensity team he was
managing to try and avoid this situation happening?
The turning point happened when I got to see someone from the crisis team
who suggested maybe there was a better outlet for all this energy and thoughts.
And he talked about something called The Endless Poem
and at the same time, another counsellor mentioned to me the seven minute splurge.
What those concepts are is to put thoughts down
so they don't occupy thought space at all.
They just occupy paper. Um, that has grown.
So I've now published a poem and I published a book.
Wow,
I've got another book which documents or all of this that
I've described you happening more like a journalistic memoirs type,
uh, book, which I haven't published yet.
That's fascinating. I might get it because of all this experience.
Yes, yeah, I might get you to share the poem a bit later on. If you don't.
If you're happy to do that, it doesn't make a lot of sense to neuro Typical.
I'm sure neuro diversity will make a lot of sense.
Yeah, but it's I just think it's fascinating. And
as an aside, this is something that we're kind of exploring and experimenting with.
Curator change in terms of how do we get people to
express what's going on for them and their experiences and in ways
that make no sense.
So it's absolutely perfect to have something like
poetry or songwriting or even fantasy novel writing.
Yeah,
it does have a real outlet for those thoughts
you mentioned when we were chatting earlier that you've had
you've spent 10 years under the care of mental health services. Um, yeah. What?
What was that experience like for you to any,
um, lots and lots of sin posting.
So even though you might get to know someone
really well beyond personal first name terms with them,
they would immediately lose your case and you'd be referred on to someone else.
Um, I also move GPS surgeries five times,
which is hugely problematic because even though there's a primary care record,
uh, the mental health record is separate
and that really problematic when it comes to medication.
So medication is prescribed by your mental health team,
and so they have the final say whether or not the doctors can give it to you.
And the GPS similarly had a problem that they
couldn't continue providing medication without
an existing existing certificate,
which, as we're saying when it's going back 10 years.
Then, even though the medication is identical, nothing has changed.
They still want to do blood tests.
At one point that I was requested to do for annual blood tests.
Yeah, so I went Hang on a second. Your math is wrong at the fourth one. Yes.
Yeah, yeah, yeah, Absolutely.
Um, And in that in that time with mental health services,
did you spend any time in the hospital?
Uh,
absolutely.
Inside of a mental health hospital four times now for different periods of time.
The most exciting one they actually sent me to.
Well, I've been sent to suffer twice,
which is the neighbouring county.
And
so I've been to private and public sector,
and I've also been put in a section 136 suite,
which is a complicated arrangement where they lock you in a room for 24 48 hours or so.
Work out what to do, uh, for safety.
And what what impact did that have on you?
Uh, I find that the most calming environment, the lighting is perfect.
The noise is perfect. Um,
the only difficulty is leaving.
So you're going back and you're going back for a very clinical, Um,
a very sort of
try to think of the word. Now
there's a lot more happening.
Maybe a lot more things when you're thrown back into the real world.
When you've been in an institutionalised situation,
your body takes a little bit of time to change and adapt.
It's sort of like a mini rebellion,
and it's interesting because the way you've described
that experience of seclusion as it were there of
being just in a in a room with no stimuli actually sounds really appealing to me.
You and you can only get there if you call 99, let's say Yeah, but actually,
the flip side of that is you do hear people's horror stories of
being forced into an environment like that when they don't want to be.
But that's not how it felt to you. Doesn't feel like that.
The other experience I've had now twice is being locked in a police holding cell,
so it depends on what you say.
What trigger word to use.
I won't tell you because you don't want to
know how damaging it is to have trigger words,
but
certain trigger words trigger the police
and certain trigger words trigger the ambulance
and the police are not allowed to
take you to hospital. All they have one they have on occasion actually done that.
Um, the police are only allowed to hold you for a certain amount of time
whilst they do their investigation.
The holding cell is a very common environment again. Low light, low stimuli.
There's often activities that they give you two.
So they've given me word searches and colouring
and pens and paper. I said not to give me pens and paper because of what I'd write.
I wrote them the Miranda rights out for them.
Brilliant.
And so when you came out of that that sell in those situations,
you were coming in a lot easier because that's like a repatriation
type thing that they'll talk you through what's going to happen.
They'll get you home.
They'll make sure that you're safe and that you're not
gonna not gonna cause any harm to yourself or others.
I suppose What's coming to my mind now, though,
given the other things that we've talked about in terms of,
I think again earlier you said, you've you've got ties with mental health services.
You have to tell them quite
you have to self discharge. You have to say that matter of factly.
I do not want to continue this arrangement. I feel I can.
I'm self sufficient. I can manage my own environment.
Yeah,
it is whether it's whether that those experience that you've had and
the support you had for mental health services have helped you on
your journey or whether you feel that they have hindered you at
all and whether other support would have been more helpful if that.
If that makes sense,
I feel I could have used that 10 years in training and development,
and I would have been able to develop some of the skills.
I'm still trying to get the training for now, too.
Things like how to how to come across well in an interview situation.
Professional context, how to socialise If I have been doing that 10 years ago,
rather than wasting police and ambulance Stein, um, then, yes,
I would have been in a different place now,
but you didn't have that diagnosis of Asperger's
know what the conversation in 2015 literally was.
I can't read people's faces and he said possible
Asper gis syndrome Highly likely,
right?
Right.
But the route to support you was still very much
through mental health services rather than I was trapped.
At that point, I had to keep attending once a week, twice a week,
making lots of car journeys.
And then it became train and bus journeys.
Yeah,
and and And how have you How have you managed your kind of family responsibilities?
I don't know. I really don't know the answer that I'm a natural mum.
So I just love kids and I love mothering them.
So yeah,
the way that I approached it was always be as hands on as is absolutely possible.
I read the pregnancy books and I went, This is absolutely humorous.
It says, Men, here's your one page and I go, Well, I won't read the men's page.
Then I'll read the book.
And then I read some more books and then I go into hospital and I say,
That's interesting.
Is that the Is that the doctor?
Is that the Are you trying to find out if the baby is Catholic and things like that?
And at one point,
I was an attorney when I was trapped in
the mental health situation and he turned to me.
And what kind of doctor are you?
So I like that. Just observe. I know what the options are.
I know what you're trying to find out.
You're trying to look, find a baseline and then see if there's any differences.
Change of trend of things. Yeah. Yeah. And how old are your Children?
My oldest is now 13, and my baby was born on the 24th of September.
Wow. So you've got a real spectrum of
Children? Yes. Spectrum would be a good description of the Children.
Yeah, I've got a builder. I've got a historical philosopher. I've got musician.
Yes, Um, definite traits.
But I'm not allowed to diagnose the Children and say what they've got.
That's up to whoever is looking after them.
But they've all been they've all left high intensity now,
and they're all very much happy in the situation.
Also going to talk about them, so it's irrelevant. But you want me to cut this out?
What happens with the kids is the kids, isn't it?
It's fun to talk about his parents and say but
but it's okay. I get the support because I've had the experience that I know.
Yeah, I know what can go wrong.
So I just tell them Yes, I know you want to say that, and I know you feel like that,
but it would be really helpful if you didn't.
Yeah, So I got them, I got them. I got a lot of sets of ear defenders.
It defenders his best for kids because it's like a
toy that they can put on whenever they're feeling stressed.
And I also built my son again,
but we're not talking about a little play down in the in the living room.
We're talking about a shed like carpeted, put lighting in electricity, Internet.
And he lived in there for a short time.
Yeah, kids, kids. But it's about adults, isn't it?
It's about the kids Services is potentially now going to work.
If the if we deal with adults properly,
that's that's Yeah, that's really interesting,
because you and who you are today is very much been shaped by your experience
of the system, I guess. Yes, that's right.
Yeah, And if that had been different,
then you know your life journey might have been different.
In some ways, it might not, but it might have. You might still
have as many kids are still.
Yeah,
they might.
They might not have had such a turbulent journey
of their own because having to witness mine.
Yeah. Yeah, and that's that's Yeah, that's so important. What do you think?
What do you think would make a difference?
And then we met the other day and we were talking about this ethical framework,
whatever we mean, we mean by that.
But what what thoughts do you have about how services How the council, how health
could work in ways that were more ethical, if that makes sense
to you,
Um,
I have learned you have to treat everyone as a person
regardless of what you call mental mental capacity,
because mental capacity is very subjective to depend on which doctor you speak to.
So everyone should be given
just the right to communicate in a way that's
easy for them. Uh, what they're both their needs are.
And I guess, to an extent, what they're
barriers are
understanding someone's needs and barriers.
You can you can give them the right support.
Yeah, and it's clear, uh, correct me if I'm wrong,
but what I'm what I'm hearing there is.
There have been times in spite of the difficulties that you faced,
where people have clearly responded to you in a way that's been really helpful.
What is it about
those people? Are those interactions that's
felt different or made the biggest difference for you?
Um, the ability to put you at ease. So it's very easy for me to, um
you get to a point with one of my workers,
where there's frustration which builds to an aggression.
If I meet someone like I met a lovely gentleman called Blessing in any,
and his approach was just to smile and laugh all the time.
And that put me at ease because I could understand
what he was trying to communicate was not the words.
It was emotions,
and I could feed off those emotions and learn those behaviours.
Yeah, my son describes it as emulating the behaviour of the person that you're with.
So he says, when I'm put with a toddler,
I will play with the Lego and I will break things when I put with the police officer.
I'll explain to him the way the law works
and how to do and how to do his job, which is the worst part of it for me,
for me that I will.
I would almost try and copy the behaviours of the person I'm with in order to
fit in with society.
And I just have to be aware of masking and just not masking in a
situation where someone is trying to find the
root of the pain and needs information.
MM.
And so So.
The other side of that, then,
is what is it that's unhelpful about the way people respond to you or interact to you?
So I definitely think I share my Children's demand avoidance.
So if I am asked too many questions
and incorrectly phrased a word question
or asked to complete a form which is clearly illogical,
then I will.
I will rebel.
And that's not the outcome that anyone wants in any situation.
Because when I rebel,
I will fill out the God nine or the gods seven form to
look like I'm in the worst situation I possibly can be in.
And yet, when I present in the psyche psychological or psychiatric interview,
I'll come across as completely capable.
Yeah,
I can get myself into hospital and get discharged within three
days a week because I can change behaviour on a whim.
Mm,
yeah.
And that's to do with the people and the environment and what's been asked of
you and your ability with the NHS on their multiple option forms and said,
Why not simplify it?
Why not simplify both the wording and the number
of options on what was their response to that?
I believe they've taken that feedback on board. They interview a lot of people.
They do a lot of online,
uh, evidence gathering.
And yeah,
the outcome is that I have a better understanding of
the way the NHS is trying to do their job.
And I understand my part in that.
And so again,
I know from previous conversation that we've had
that you're involved in service change or,
you know, sit on different groups or boards or whatever for for,
for for just a living, really.
I just do that just because I have experienced
things that I don't want other people to experience.
And how important do you think it is that places like Norfolk
have people like you directly involved in
the work that they're doing.
I want to really take a close look at myself and
say I'm not the perfect person to be on these boards.
I'm just the most vocal.
I think there are very,
very clued in people that are just not able to communicate the way that
I do because I write poetry because I write songs because I wrote books.
Um, I have a tool that I have to.
I've had to learn that I've developed a high level so I can communicate.
So I largely like to listen to other people. That's how I get my information.
I sit on a train or a bus and someone comes along and says,
My child just won't settle And I said, Well, have you tried this?
Have you tried, uh, sensory?
I don't know what you call it,
but either sensory blocking or sensory change in
order to make the environment more settled.
So I've been I've mainly taught people how to manage
their Children through personal experience of how I manage myself
such invaluable experience, and it's great.
I mean the majority of people,
if they sit on a bus or a train and there's a child screaming.
The place down will try and avoid the situation, whereas I will put myself out there,
meet a complete stranger and build a bridge.
Such an amazing skill.
And so, yes, I'm not.
I'm not the most intelligent person in the room,
and I'm certainly not the most eloquent.
All I have is the skills I've learned,
and I I sense in that that you're doing yourself a disservice.
You know how intelligent I know how
I am. But look at the facts, cat. I don't have a job.
I don't have a steady source of income. I am.
I have sabotaged myself on multiple occasions.
And so how is that? How is that living?
That's a strange way to approach life, but a perfectly clear, logical,
autistic way of doing it.
Yeah,
again, when we talk about this thing, we call co production,
which is essentially what what we're trying to do.
But we don't often use the word because it's a bit wonky and
people don't often understand it.
We are essentially talking about how we value what people contribute,
and that value goes way beyond the
financial exchange or the economic exchange into a
realm of how we really care and support and nurture each other in society.
And that's where coproduction evolved from is how do we get past this point of
only being able to value what we pay for
when actually,
there are skills and exchanges that happen
in all our lives every single day
that are of immense value to our society.
But we do live in a financial society,
and I have had to learn those systems and break a lot
of the rules because I don't understand the systems so things.
Things that I have used my talents for
are dealing with companies that do not understand,
um, the barriers that we face
and teaching them the barriers and also putting in the complaint
about the people that have made the mistake to retrain them.
And the complaints are always financially paid.
So that is another way that I've made a living by
basically explaining to banks or
organisations that are financial organisations,
how they need to approach the things that they're doing.
Dad,
Yeah,
is that something you need to deal with?
That's just one of the things I have to deal with.
It's not It's not something that I want to deal with. It shouldn't be now.
It should be later. She's checking that I'm going to be at the appointment later.
I'm just gonna say, Is there anything else? None of that you would like to
re emphasise what I've learned,
which is that we need to look at people's needs and the barriers that they face.
That's the That's ultimately where you're going to get co production
when you have an ability to
help someone, to communicate their needs and their barriers,
and then to be able to use that information to support them.
Thank you. I'll stop the I'll stop
now
because we're at a time.
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