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Report transcript in: Laura shares their experiences of a late autism diagnosis and the impact it has had on her life and career
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Laura shares their experiences of a late autism diagnosis and the impact it has had on her life and career
Please Report the Errrors?
disability disability
recorded.
Sorry,
I didn't I didn't realise I pressed that because it
reminds me of the Henry eight song about his wife.
Divorced, Beheaded.
That's where that came from. And you want to write songs about my experiences? Good.
Yeah. Oh, well, we'll just carry on chatting. Pretend it's not recording.
I love soon for this because you can. You just just just carries on.
I'll edit this out, but, um so, yeah. Hi, Laura.
Do you just want to tell me a little bit
about you and why you're involved in the Norfolk?
Or is it Norfolk autism for him?
Yeah, well, I don't even know how I'm involved in it.
I got a link at one point,
and I'm at the point in my life where I'm trying to connect with as
many other autistic people and organisations as
I possibly can to create a community,
a network to stay connected with in my local area because
it's all well and good,
finding out your autistic and connecting with autistic people around the world.
But when that doesn't translate to actionable change on the ground into my life,
then you know all you get is everyone's really horrible traumatising stories
and no action ever gets taken.
So I'm trying to find avenues to take action, improve things,
help other people who are like me and just find community that I'm not alone.
Yeah,
and and that's because of your own experiences and some
of your own journey over the last few years.
Yes. So I found out that I'm autistic in 2020 at 33.
At that point, it was a self diagnosis,
and self diagnosis is valid diagnosis.
If you know you're autistic,
you spend hours and hours and hours of time researching whether you're autistic and
if if it's if it's because to get professional diagnosis is almost a privilege.
It takes 3.5 years on the NHS to
get the formal diagnosis and you can go private.
But that costs money and not many different
places around the country and around the world.
Um,
you get different experiences of whether you can
actually be professionally diagnosed by somebody else.
Um,
but what happened to me was I ended up in a
crisis situation and my 3.5 years got shortened to eight months,
and I did eventually get my confirmation.
Um, in August 2021.
Yeah. And what?
I mean,
what was it that led you to thinking that you or realising that you were autistic,
all the changes and disruptions in covid. So before covid, I was
married with two kids and a career as a teacher and over the house it was ticking
all the boxes of life goals as an adult that I'd learned since I was 14.
In fact,
my life plan came when I was 14 and a child development class when
they told me that my eggs would reduce fertility by the time of 35.
And at that point I was like, Well,
I need to find someone that I want to marry by the time
in 25 so I can have both my kids by the time 30.
And then I can work on my career and looking back,
that's an incredibly autistic way of scripting my life out.
And I ticked all my boxes and I succeeded,
but I hadn't really thought what would happen after the,
um, house husband, Children and career.
And I wasn't really planning for divorce or losing my career.
But those sorts of things all ended up happening.
Sorry, I'm losing the thread of what I'm doing. I am. I'm aware of it being recorded.
I'm sure you can get it listed out, but that's fine. I can do. I mean, it's fine.
I know it does. That's why I like to talk to people before him. Because it does.
It does. You do lose the threat.
So, yeah,
in in 2020 you said about covid and how that impacted
you and made you start to think that something was different.
Or, you know, you needed to find out why you were reacting to things differently.
Tell me a little bit about that. What? What happened for you then?
So with all the schedule changes initially,
I was really positive from working at home
as I've been a student with Open university.
So I knew all about distance learning, and I thought, This is great.
This is my opportunity to enhance my career.
And I threw myself into developing digital
online learning distance learning for the kids,
especially focusing on inclusion.
Um, there was a big issue with Children not having laptops,
not having enough laptops to do their studying and complaints
that they couldn't access the really long power points.
So I threw myself into creating a website. And all of this,
um, so
complete hyper focus,
basically of creating this website that contained the full curriculum,
had all of the language of a teacher that was easily accessible by phone,
all laptop and that Children could access via Microsoft
teams developing online classrooms basically consumed my whole life.
But it was It was like, really exciting for me.
But it was all these schedule changes that compounded and built up and feeling.
Kind of
like my husband was around me all of the time. My family were around me all the time.
There was constant overwhelmed. There was no escape. There was no going anywhere.
There was no kind of rest or relaxation.
It was constant noise, constant noise from the news, constant changing of, um,
like the guidance and the hands face space thing, hands, space, hands face, face.
Whatever it was,
he's really hands face space. Yeah, hand space space.
So those hands face space going on.
And then there will be people on the radio talking about how they
were lonely and had anxiety and all of this sort of stuff.
And then I had voices from all over the place going people just overreacting.
It's just a little common cold.
It's only killing old people and only killing ill people.
It's like, Well, it's getting older, ill people.
I don't think the older, ill people are happy about dying as they were supposed to,
not care about other people, and I got this sort of huge,
overwhelming empathy for everybody else.
It was just too much,
and I was just getting more and more anxious about it and working in the school.
They were dragging us back into the school and this is right.
We should be going back to school.
Why can't hold of society just shut down and stop this thing?
Why do we have to pretend like things are normal getting
kids back into school because it's for the good of them,
But really, it's for the good of the economy or something.
There was too many mixed messages and critical analysis going on,
and I ended up sometime around October, crying on my bedroom floor, thinking,
What is wrong with me?
Life shouldn't be this hard. How come everyone else is getting on with it
and employed Dr Google to sort of figure out my symptoms of my traits.
And I came across bipolar disorder, borderline personality disorder, anxiety,
stress, depression and none of them really kind of fit.
And also the only health conditions I ever really had in the past
was being signed off stress kind of three times due to teaching.
And
I came across PMS and I was like, Well, maybe if I got something to help me with PMS,
because it feels like maybe it's it's a bad moment and it's a good moment.
It's a bad moment. It's a good moment. Maybe it's hormonal. Um, and I told my friend
that was on antidepressants because Mental Health Week,
You're supposed to tell people and open up and talk about these things.
That's what they encourage you to do.
And she said, Well, yeah,
species get anxiety worse than the general population
is like What a species Get anxiety worse.
And what do you mean, What? I thought you knew autistic? No,
but we talked about in the library. No, and she was like I got diagnosed two years ago.
I thought you knew he was like. No. How did we miss this?
Probably like life gets in the way. I had kids. I had worked.
We hadn't really connected, but she was still my closest friends.
And it turns out my closest friend in school was also autistic.
Which is probably why we were such good friends in school. Kindred spirits. Um,
at this point, I then told my mom, my friend thinks I might be autistic,
and she was like, Oh, yeah, I kind of remember that book about Asperger's Children?
It wasn't for my own kids. I was. It wasn't for the kids. I was child minding.
It was for my own kid. And I was like, What?
Yeah, but temple Grandin said that if you get to adulthood,
you don't need to know that you're autistic was like all right,
so I had confirmation from my friends. My friends thought I was autistic.
My mom even thought I was autistic since I was 16. By this point, I was 33.
So it was kind of then went and did a deep dive in social media and found YouTubers
and I was just like, Yeah, this is me. This this is my experiences.
How did I not know about this?
Um, And told my GP the next day,
and I see your mouth moving, and I'm not sure saying anything.
I can't hear you.
Sorry. I've got you on twice.
I'm just going to tell my kids do to leave because I'm still recording.
They've just come out. So I wasn't sure if you were talking to me or not.
Sorry. You're right. It was a good job of keeping them out of the way for 45 minutes.
Uh, yes. Sorry. Uh, carry on. Yeah.
So social media basically confirmed it, and I phoned my GP. Gave an info dump of what?
I thought I was autistic and wanted to diagnosis.
And there were no questions, and she was just like, Yeah, OK,
I would pay to autism services.
Norfolk
by December.
I got the questionnaire through, and I annotated all over it,
saying these questions are too difficult to answer to
them definitively, which I think is another classic autistic thing,
because it's always depends on it.
Depends about this. Depends about this.
Um I've got a letter confirming that there's a
high probability that I have an autistic spectrum disorder,
which I know that's the diagnosis. But I like to say I am autistic.
I don't like to have an autistic spectrum disorder, but
that's the way the medical world is currently still.
And I told my employers to all of this, Um, I worked in a school
and I was expecting them to know about autism because they've got kids who are
autistic and they have a duty of care to the kids to be supported.
They have a duty of care to the teachers to look after those kids.
So I was fully expecting some form of support from my employer,
where they would actually care about reasonable adjustments and know what to do.
You know, I just discovered I'm autistic.
It wasn't my job to know what workplace is supposed to do,
and I handed them all the documentation,
and these are the suggested reasonable adjustments,
and they just kind of thanked me for the information.
They gave me an occupational health meeting,
and that was really good because the occupational health nurse was like,
That's wonderful that you want to help autistic kids in the school,
and it's wonderful that you want to help teachers understand autism from the
lived experience from your lived experience and to be able to improve,
um, provisions
within the school. Um, that was really positive. Yeah. When?
When you were when you were working at the school. Before that point.
Laura, you know, did you have a sense that, you know,
your contribution was valued as a teacher?
That you were good at what you did? Did you?
If they treat my appraisals, my appraisals were,
it turns out not from my line manager.
But my appraisals were always good that I did good contributions to the department.
I felt like, at least on a middle management scale,
I was appreciated for what I was doing.
What I really struggled with was getting any form of
senior leadership into my classroom to see what was doing,
what to talk with me.
So from their perspective,
I just felt entirely ignored.
But from an autistic masking perspective, I thought if I'm being ignored,
that means I'm doing a good job because they're not harassing me.
They're not, in my case telling me that I'm doing something awful.
So Okay, that's fine. They must be busy with other people who they need to
Yeah, you know, support more in some way.
Um, so I felt frustrated because I had ideas and I wanted to advance my career,
and I wanted to be heard.
But
it turns out the person who was actually my
line manager was the vice principal of this school,
and they were literally absent from my life the whole time that I was there.
So looking back,
it's like I had no support from anyone that was
supposed to have any support from the movie is kind of
and that was just, you know, that was pretty diagnosis in terms of pre diagnosis.
Yeah, And then when I went to that line manager or that vice principal and I said,
Look,
I filled in this review for him about how I can speak to leadership and
kind of like what I thought the leadership of the school and I was like,
I have to admit that I was in a bad mood when I did it, and it came back very negative.
So this is a very naive thing where I would go to the leadership of the school and tell
them I filled in the the question they're saying
that the leadership is terrible directly to her face.
And I was like, Yeah, well, I'm getting support for my mental health.
She was like, thank you for telling me I didn't think anything of it.
And now I'm looking back thinking
they just they just wanted rid of me.
Basically, by this point, I was too difficult for them to work with,
um, after the after diagnosis, Or that was before the diagnosis.
After the after the self diagnosis,
the occupational health nous encouraged me to fill in a wellness action plan
and in the wellness action plan, I was very honest with what I needed.
And I admitted to them I said, Look, this is blunt.
I have not used any artistic masking to make this seem nice for you.
These are the things that I need. This is how I feel right now.
This is how you know I'm struggling. This is what I need from you for my,
um, sort of mental health and well being.
And looking back,
it was it was a whole series of red flags that I am seriously struggling.
But I was so alone
and in light of my autism diagnosis.
My marriage had started breaking down as well,
so I could not have been in a lower place at the time.
I was putting on a brave face still,
because at the time I was still absolutely terrified that I would get fired.
So it was just a constant conflict between wanting to fit in,
but also needing to get my needs met and not having
any way of getting that done in a healthy way. What they should have done is gone.
Laura, this is you.
You We need to give you some support here because this
is not how you should be feeling in a school,
but submitted that beginning of December.
Didn't get a meeting booked in until the beginning of January.
So I was left in that time period to kind of get on with things.
And because I was studying my masters and my masters
had always been really affirming of my ideas of teaching.
My tutor had always been like, Yeah, you're really on the ball.
You really understand the issues of the education sector.
Um, you know, you're talking about you're clearly a passionate,
dedicated teacher and I felt supported in my studying and I wanted
to find out about the student voice for the next assignment.
Um, and so I spoke to the autistic kids that I talked in one of my science classes like,
would you like to be part of my research study?
And they're like, Yeah, that's great.
Oh, our teachers never really listened to us. They don't really understand us.
They don't even know what I'm wearing. A sunflower lanyard.
They think it's just like sunflowers,
and it's supposed to show my hidden disability.
And these are the kids that had created the power point
to be shown informed time about sunflower lanyard and hidden disability.
That is how I found out about it. So for me, it was like a great
collaborate.
I don't know what the right word is, but they taught me something,
and I wanted to learn more from them.
I wanted them to be involved in their story essentially
and in improving things at the school for them,
because at that time I hadn't realised like how bad their support was.
Um, I knew that I had
altercations or interactions with the same co
that I thought that seems dodgy. Um So we spoke about a different child, and she said
his mother says he needs learning support, and it is a computer to learn.
But we know he's just a naughty boy, and I was like,
That's awful.
It's not naughty boy in my class,
you just need support and attention and guidance on what he's doing.
Like you're in charge of people with special educational needs and disabilities.
But I was too scared to say anything to anybody else because I was just like, Well,
maybe this is normal.
Maybe I really am just like this weirdo that has empathy and cares about kids.
Um, but autistic masking trying to fit in, I would be told by my husband,
also in the education sector.
Why can't you just do what everyone else tells you? Like
I didn't have autonomy before finding out I'm autistic.
I didn't really have autonomy to be who I was.
And then when I found out I'm autistic and started explaining to people,
I became someone that they didn't want to be around, I guess.
Mm.
Um,
but anyway,
so these autistic kids that were supporting I set up for Microsoft teams for them
because They were just full of energy and excitement.
And so I wanted to hear from them.
I wanted to be able to share my research,
study with them and ask them about the questions are intended to ask,
like pre vet them and make sure they're comfortable
with them and understood them because communication disability.
Do these actually even make sense to you?
Um, I got permission from the vice principal who didn't ask me anything about it.
But as I said before,
I found it really challenging to get them to be interested in anything I'm doing.
Don't have anyone to talk to you about my masters.
Um, but I got the permission. I've got the permission from the Children's parents.
I emailed them copies of the questions and any
concerns they might have had about the study.
And I just got positive feedback from them saying, Oh,
it's great that you're taking interest and you're able to
support My kids had emails from other parents saying,
Oh, it's great that so and so had to teach you actually understand them.
Thank you for being in touch,
especially on a weekday or weekend or something like that, and I was just like,
Isn't this what we're supposed to be doing?
A flexible working?
Um
And then in January, I finally met with the line manager
and shared my wellness action plan
and she said, Well, do you want to do it with more of a mask on?
I was like, No, I'm not masking my wellness action plan
And she was like, Okay, well, do you want to do it in a different format and hope?
And I was like, OK, I want a positive one. I want a positive one.
That's not all of these red flags and things kind of part of me fawning and masking.
So I created an infographic
version,
and the main points were that my triggers for meltdown are
being ignored and being silenced like I want to be heard.
I want my side to be heard, and even if you say no,
I want to know why you can't do these things that I'm asking for.
Um, and I spoke about music in the classroom. I spoke about my passion for learning.
I spoke about how I don't experience emotions and be able to
give them words. It's more about a colour
and kind of a feeling,
and I associated a lot of my feelings with scientific concepts like star formation.
Um, and
I wanted to be authentic, and I wanted to be me,
and I wanted to express that I am a positive role model in the school,
and I'm very careful and competent in what, in teaching the Children.
But I'm also very in tune with this whole other side of me that I'm just discovering.
And she was like,
Well,
we don't want you to be an autistic advocate because your emotions are still raw,
aren't they?
They're still new and raw, and I'm like, Yeah, but with the right support,
then I should be able to be a positive advocate and role model in the school.
And she said, Is there anyone in the school that can be your mentor? Can help.
You know, it's like, Well, are there any other neurodivergent teachers?
Can we have a neurodivergent support group?
And she says, I can't give you any details of other people's diagnoses, and I'm like,
I didn't ask for other people's details of diagnosis.
I asked if we can have a new division support group
that people can choose to come to if they wanted to.
You know, you advertise it and they will come
even if I really want there to start off with. Like it should be.
That should be in a work place to have a support
group that neurodivergent people could go to if they want to.
Um, no. They thought I was trying to get medical details of other staff members,
and so that kind of failed. And then there was another meeting where I
I can't tell the difference in any of these. It gets a bit boring if I keep doing that.
So there's two meetings for that.
And then by the third meeting,
because tensions with my husband had reached an all time high.
After Christmas, I walked out on him, which meant I had to leave my Children.
So I had to walk away from my family
to get away from him, to make a stand.
Like I believe my Children were completely safe
and he lived next door to his parents.
So, like there was no danger or anything, it was more.
I don't feel safe to be around this person,
and I don't feel safe to have my Children watch this.
You know, I don't have any questions about his parenting. It was how he treated me.
He's attitudes towards me,
and I fully expected the services, for example, social services,
Children's services and the police to be able to support that.
And I expected
my now ex husband to have stepped up and going, OK, I see you're being serious.
There's things I need to do to change and take
some responsibility for the way they have been treating me.
And he didn't.
I went down to his parents beforehand and I said, Look, can you help me? And
your son is Your son has been doing this
and his dad was like, That's what men do.
It was like You've done it plenty of times and I was like, Well,
I'm not standing for that.
It was just, like, walked back and I told you it was like,
This needs to end and initially he was fine.
And then it got to this point, just like I can't stand this anymore.
I got my mom to come pick me up.
He was like, but I love you. It's like if you love me, treat me better, wouldn't you?
And he couldn't. He couldn't. But I told my workplace I got signed off sick.
I said, can you please look after these girls in this support group, um,
that I thought she knew about, And 10 days later, I get a phone call from the school,
and they weren't asking.
How am I? After my traumatic experiences, they were asking.
They were telling me that I was suspended for pending
disciplinary investigation for a support group where I targeted vulnerable SCN
students created an unauthorised group which I used as if
it was social media using emojis such as smiley face Heart
and told Children that I was proud of them for sharing my journey.
And that was why they put me under
in a disciplinary investigation for gross misconduct.
Mm.
And you've been fighting that
since
in terms of and and not not got anywhere with it.
And you mentioned earlier around that, you know, even going to the, um,
safeguarding the lado,
um,
people and just not not getting So are you getting
any support or help with any of that now?
No.
Because apparently because the one lawyer and the lawyer that I tried to go to,
um independently said.
But you're autistic and you've got a teaching qualification.
That's not a disability. My sister's got m s.
Now that's a disability, and it's like attitudes like that is so prevalent.
I had I asked the union to support me,
and the union said they're allowed to do that about the employee.
Yeah, they are allowed to fire you because they don't like you.
And I was like, Well,
why don't they just say they don't like me because they're not allowed to do that?
So they're allowed to destroy me.
Basically, they're allowed to destroy my self esteem,
and they're allowed to make me feel passive suicide ideation.
And you're saying that that's OK, you're on the side of the oppressor.
And the union said that it wasn't going to get referred to
the DBS or Disclosure Environment Services or the Teacher Regulation Agency,
or that they would be interested in it.
And they both were,
um, when the investigation was happening,
the employer went to the Lardo Norfolk County
Council and lied about me on 50 occasions,
exaggerating claims that I made.
When I said I had a meltdown,
they turned that into ranting and raving in the classroom,
and we shouldn't be exposing Children to that where my experience of a meltdown was.
I raised my voice for 10 seconds, said, Do you want me to go full?
Autistic regretted it.
Shut down, went on. Verbal took the register. We sat there in silence. That was it,
and they turned it into ranting and raving.
And we shouldn't be exposing kids to that.
And I was not in any state to defend myself at the time.
And then when I went to Norfolk County Council
and I made complaints about it and I said,
You should not be allowing employers to
talk about employees behind their back they have
abused your system here to get rid of an employee they didn't want to have.
You called me a safeguarding risk based on negative stereotypes of autism,
and they weren't having any of it.
So I've been to Norfolk County Council for the full Complaints Department,
and they only responded if the employer rights back to us,
If you get these issues resolved,
then we will attract any information that we hold on you or something like that.
But they refused to meet me in person Like I just wanted to meet in person and explain.
This is what is happening to me
like this is what happened to me. This is what happens to other people.
I wanted to walk into the sea and die.
I wish I had cancer so that people would understand.
Like I shouldn't have to feel like I want to not be here anymore.
I shouldn't feel like I want to take my own
life like there were points where I didn't know different.
I didn't know whether. Like what?
The line is between imagining committing suicide,
to get people to notice versus what makes someone go off and actually do that
like, where is the line? And then you do Google again.
It's just like no one knows the line. People should be taken seriously.
Even my GP couldn't take it seriously. She said, Well, what do you want to do about it?
I don't know. I just wanted to put in my medical record that this is how I feel.
And she was like, Okay,
she got in a huff with me because I refuse to sit up in bed and
put my feet on the ground to ground myself like I couldn't take her advice.
Um, so she got upset about it, and then it was like, Well,
I can't go to any services there because even my doctor is not going.
This is alarm bells. We need some special health.
And then I got terrified that they were just, like,
institutionalised me if I made it worse
and I was lucky enough to be living with my mom and my mom was looking after me,
but I wasn't independent, and I wasn't proud of what I was doing
in my life. I was independent. I had a family. I had a house, I had a career.
What is wrong with me now?
Like everything completely collapsed and there were no services to help me
understand that because I've previously allegedly been capable enough to mask.
And that's the thing with mask
I was able to mask when I was younger and my brain
was more plastic and able to kind of absorb all of that.
And then it reaches like this maximum capacity of can't do this anymore.
I'm not even going to pretend I can ask. I refuse to be anything but my authentic self.
If you don't like it, then you don't deserve
you know I'm not.
It's really hard to balance its like,
I'm not gonna not be authentic just to make you comfortable.
And then they just turned into this kind of angry spiral of
banging my head against the wall,
constantly thinking where actually is my safe space here.
And my only safe space
is in my home.
Um And
what? What do you think?
What do you think would have made a difference? What? What do you think?
And I have helped.
It's all I needed was someone to amplify my voice, to take my lived experience
and to translate that
two other services to go. Yeah. This is a complete misunderstanding.
This person needs support. This person isn't a criminal.
This person hasn't done anything wrong. They've been misunderstood.
I wanted my union too.
Be on my side. And my union was not on my side. My union was on their side.
I wanted Norfolk County Council to listen to me.
I wanted to know what services they were like. I wasn't.
The diagnosis was eventually in August and then I got dropped like I'm an adult.
I've got this crisis situation.
I got diagnosed fast, tracked because of the crisis situation.
And then there's no support like, Great. Here's your diagnosis. Good luck.
And it's not autism services. Norfolk like,
you know, they did all they could. They did the diagnosis bit.
It's just then then what happens?
It wasn't until a year later that we'd get this
letter through the post telling me about Recovery College,
which is provided by the NHS.
And the only reason I found out about Recovery
College was because they were trying to recruit me for
anxiety drugs. I was like, I'm not taking anxiety drugs. I'm not. I'm not.
I'm not taking mind altering substances to pretend all
the stuff that's happened to me isn't happening.
It's not depression for no reason.
It's depression because of set series of incidences that
happened to me that needs to be resolved.
You can't drop them away. Give me resolution by fixing them.
But I went to this first recovery college thing.
It's called How to Tell your story,
which is interesting because it's like I'm trying to tell my story here with you,
but they didn't really want me to tell my story what they wanted to teach me how
to not tell my story and how to shut up and make everyone else feel comfortable.
So I would talk about passive suicide ideation and they go, Laura,
that we've got another class for that staying safe.
And I'm like, I thought this was about how to tell your story.
And this is part of my story.
I thought it was about a group of people who are coming together to share their
stories and to be able to take comfort in each other's stories that we're not alone.
And it wasn't that there was so much talk about
kind of fitting in with the people around you.
I was like, You know, that's so a bliss.
But maybe this course is written by neuro typical for neuro typical.
And maybe it works for neuro typical, but you're dealing with.
I am a New Neurodivergent people person and there
will be so many other people that come here,
and they are traumatised because of their neurodivergent
trades that are not recognised or supported,
and they don't know, even at the neurodivergent.
And like I went to
there were four sessions. The first session was really positive.
I was like, This is great.
It's the first time I've basically been out of the house to
meet other people in over a year or something like that.
Um And then there's only one other person and
they made me feel like my contributions were valued.
And then the next one, it was kind of getting more.
I was expecting more sharing and there wasn't.
I think that was the time when they when they said, You know, I just
We don't want you to share that bit or something,
like you need to You need to only share
the bits that aren't confidential or something like that.
So I was just like,
But these bits are trapped in me.
How do you solve an issue of just keeping everyone secret? Everything secret.
And then, by the third one,
I was in such a state that I was literally in a suppressed meltdown for the whole time.
Like I was just crying into my hands
bearing in mind.
This is like NHS and social services or something like that,
and they just kind of let me do that.
There is No.
Maybe you could try this service. Or maybe you could do this.
It's like I am constantly this beacon,
screaming out for someone to be able to help me in some way.
And there's nothing coming back at me. I am just on my own.
The whole autism thing isolate itself, is so true. I don't want to be isolated,
but I am isolated by the lack of anyone knowing what to do or having the resource.
And I know that I'm not alone, because when you read in the news,
you hear on the news about how social services are completely overwhelmed and
not doing their jobs right and Children are slipping through the net,
and a quarter of Children have got some form of anxiety disorder.
And to say that Children and adolescent mental health services
are not doing a good enough job because they're overwhelmed.
And, you know, it all sort of feeds up in to like,
political agenda and not having enough money.
And also people who are in these jobs don't want to do these jobs anymore.
So they leave so perfectly talented people who might have to
spot this would leave because they're not being treated properly.
You know, nurses strikes going on, you know that people are not being treated well,
and I cannot blame individuals for their inability
to be able to support me.
But the longer this goes on and the more the burnout
wears off and the more I get my brain back scarier,
it becomes, and it's like I mean, this whole new world.
When I was not, when I didn't know I was autistic, I was shielded from so much.
And now because before I had like white woman
privilege and now I'm disabled and non binary.
So it's like I've gone from being in a fairly majority group,
with maybe women's rights being the only thing I ever have to worry about, too,
being this complete minority and it's like I have to second guess
whether people are going to take you seriously or not like,
how much information am I allowed to give should I should
be speaking up for other people like me in my position,
I shouldn't hide the fact that I'm non binary or
changed my pronouns for any of this sort of thing,
but then it makes my life so much more difficult as well,
because people don't know what to make of that.
So what?
You said something really interesting in law about it,
not not being the individuals, necessarily.
I mean, there is an element that, in terms of how people do, do,
respond and treat you relate to you and stuff.
But does it feel
Does it feel like then a bit like that?
There's a There's a system or there's a There's
a thing out there that's kind of blocking,
you know, your your attempts to reach and how would you describe?
Yeah, it's like an energy field, like gatekeeping or something.
It's like people don't want to hear about my experiences
from me directly because I am the autistic one,
and therefore I'm the broken one,
and I can't possibly speak for myself because people don't know what autism is.
They only picture either Saban Rain Man,
Um, or like people who have got very high support needs,
and they basically steam locks and trapped and how much of
people who were like I use the analogy of Stephen Hawking.
If Stephen Hawking was born into a body that was like
he couldn't do anything with his body and he couldn't speak.
Would we have ever known what was going on in his brain?
Would he have ever accessed their thinking? He would constantly have been trapped.
We'd never know that Stephen Hawking was capable of great things,
and he would have never been given the communication device, the wheelchair.
He wouldn't be a professor in Cambridge or any of that
sort of stuff if he had been born into that body.
But because he had the privilege of being born into
a white male body that worked an able body,
he was able to
develop his mind and share his ideas.
And there's so many people who are trapped in their bodies
and then locked away in institutions where they don't ever get the
respect for the dignity to be able to communicate in any way,
shape or form.
They're just being looked after,
like someone sort of adult baby projects or something like that.
And it's just like people don't treat each other with dignity and respect,
and they feel like
so martyrs or something that they're looking after these poor people.
With these afflictions,
it's like we treat them like actual human beings
have have you know that was really well articulated.
You have really good analogy.
And have you had any examples over the last
few years and or any experiences where you felt
like you have been heard or you have had
a positive response from somebody or felt supported,
not from a professional agency. That's action.
Any change that would be valuable to me.
Like I wanted to be taken seriously by the disclosure and barring service.
They've put me on a list banning me from working
with Children on the basis of lies that my employer told
me because my employer as power and control and the privilege
of being in charge So I was not taken seriously.
I am going to the t r A. In January next month.
My union didn't take me seriously to even be able to defend me.
The lawyers involved with that case might have taken me seriously,
but also they were so scarce with their
that communication. I didn't really feel like I was understood or hurt
like there wasn't time
devoted to make me feel confident in their abilities to represent me,
and I just got to the point where my membership expired
with the union. I was like, You know what?
I'm going to take legal action against the union.
I don't need a lawyer to represent me to the tiara.
The only person who can represent me is me.
I'm literally the only person who can represent me.
But what I need really is allies to amplify their voice and say,
I know you're treating this person badly because they're autistic,
not just me being perceived as ranting and railing.
I have no control over how other people judge me. I only have control over myself.
But if other people are judging me and say not a reasonable adult or,
um,
complaining because I'm calling them gas lighters like I
am calling you out on your gas lighting,
this is not acceptable.
If I tell you you are bullying me and harassing me, this is not acceptable.
If I am telling you, you are causing me trauma and this is not acceptable.
You need to pay attention, but people don't. So I don't feel like there has been
any professional agency other than autism services. Norfolk,
when they were diagnosing me, treated me with respect. To understand my situation,
But when they respect me, I never I don't show my worst sides.
So I just seemed like a really reasonable, friendly,
lovely person who was interested in autres.
I would like to have a conversation with them,
whereas all the people that see my worst sides are the ones that treat me badly.
So my worst side isn't anything other than arguing because I look like the girl.
They expect me to be all kind of passive and gentle and not ask questions,
whereas I want to ask questions and it comes off
as hostile and they get threatened by me asking questions.
And then they just brought me.
Yeah, I'm going to have to draw to a close fairly soon.
But what would you want to see Norfolk doing differently in
terms of I know we talked earlier about the ethical framework,
if that means anything at all to you.
But what what would you want to see Norfolk,
including something like that in terms of supporting expected support?
Sorry, that's supporting people,
um,
education,
like I feel so strongly that employers
and workplaces need to understand university.
There needs to be education directly in with the employers But there needs to
be an advocacy service that's actually well
funded and supported and well known about,
like a sort of Samaritans for autistic people or something like that,
where you can just go to and you know you're going to get someone who's actually able
to advocate for you because I know there's all
these kind of like little organisations and things.
But whenever I reach out,
there's either not enough availability or they're not in my area.
It's just for Children.
Um,
it's not even about awareness.
And it's not about acceptance, because these are just very throwaway sort of terms.
The whole disability confident thing is a joke
because it's not given people actual respectful dignity.
People need to understand respect and dignity.
There should be, I don't know.
I always think of things like there should be
sort of things in the forum or something.
Information Services in the Forum.
People who speak at these events who've got lived experiences,
who can be supported by people with learned experiences say no, we're serious.
We're the ones you've got qualified and this makes sense.
Okay, Quit treating people with lived experiences as though there
lepers or something like that.
Um,
yeah,
but I'm not sure that you can necessarily come because I feel like the note of it.
Or like it can't come overnight.
I wanted to be like that, but the deeper I dive into the autism struggle,
it's a deeper dive into things that have been going around for decades,
like black lives matters.
And it's just like inequality is rife. So
it's so hard to really know where to even begin. Uh, there definitely needs to be
education. More people need educating.
That's that's really powerful.
And I think again I was I heard you then, you know,
say that it's not just words that can be, you know, throwaway words.
Yeah, there has to be. Does that for you. Then does there need to be some kind of
action or something that demonstrates that whatever is written into
some kind of framework is people are living that?
Yeah,
I think there needs to be.
It's like positive discrimination or something is that you need to
have positive representation in workplaces of people who actually work there,
who endured a virgin and pleased to be working there like almost
neurodivergent network.
I'd love for there to be like a Norfolk
network of neurodivergent people on discord or something,
something that's local and can report back on services and things and somehow with,
like,
pressure groups or something,
saying this happened to me and then a bunch of other people saying, Yeah,
that's not OK.
You need to change how you do that and then having
people who are sort of higher up in positions of power,
who can actually,
actually that change because it's no use a bunch of people on Twitter
complaining about stuff and there not being any way of actually change.
We need to actually,
we need to be able to identify the
change reported somewhere and action on that change.
We need to be like a reporting service or some sort.
I don't know who is going to fund that. It's just like the whole world is changing.
There's so many other issues that is just like,
Where do you even start with the world's on Fire?
But yeah, there needs to be aware of reporting when inequality happens,
and it's like supporting employment stuff like
maybe since this advice, that is for neurodivergent people.
But even since his advices Override. I don't know who's funding citizens advice.
Um,
awareness, awareness, education. Not just awareness education
and role models, role models, connection networking, networking, education
and amplifying voices.
Yeah, that's so good.
I will stop the recording in a moment.
But just before I do, is there anything you want to add or
that's the question in it.
I think the thing that you've covered a lot, which has been, you know, yeah,
I could listen for hours.
Yeah,
but I can always come.
You know, we can always meet me again If there is all the stuff that you want to Yeah,
I can't do anything now.
I just feel like completely, uh oh, yeah. Oh.
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