S3 Episode 14 - Self Portrait

But with that comes an entire lifetime to process with this new bound self-knowledge and all these different layers then to unravel and at the average age of our listener is somebody who's in their 30s or their 40s So you represent Sue, the age that, for many of our listeners, their parents are. It's really important then to hear to hear your experience and to work out what it was for you that ignited that late discovery exploration after almost seven decades of life.

Well, I think there were several several reasons that finally made me uh think that this was what I needed to do. Um Um, both had been looking a lot online and realized that they were probably autistic. And they brought this to me and All of my working life working with children and young adults who were autistic, and I thought I knew what autistic was. But since my retirement um in about two thousand and seven, a huge amount had changed in terms of people's understanding.

And now when I looked online I was reading not about what was observed behaviour, but what was lived experience. Rydyn ni'n gwneud hynny. Rydyn ni'n gwneud ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl. Um, I had never really considered that that might be me too. Um, because I'd started working then um Oh, probably in the eighties when autism was first recognized in the g UK.

Um so I'd I I'd grown up with a very stereotypical old fashioned view of what autism was. Anyway, my children both led me to look again and make me wonder whether whether this was me after all.

Um And then... I also started reading about burnout. And I realised that that had been a continuing and recurring pattern in my life. Many of my w well many situations in the past had resulted in burnout, which when I'd been to the GP had been um diagnosed as depression or anxiety and the usu usual things. And I started reason really about burnout in this context and I recognised that this was what was happening to me. And here's a thing.

Mae'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n mynd. to work through it in the past because I simply hadn't understood what it was. I'd kind of plowed through it and worked through it. So the second sign was

increasing frequency of of of um of of experiences of burnout. And I thought to myself, well God, am I going to spend the rest of my life, I don't know how much longer I've got, but I've got stuff I want to do. I don't want to be continually stopping because I I'm burnt out. I need to understand the burnout and deal with it in a way that allows me to live my life really fully. And the third thing that came to me was I have a very, very dear artist friend.

who I speak to very regularly. And she said to me one day, Sue, I'm really worried about you. You seem to be disappearing. And that really stopped me in my tracks because I recognized yet again that that was a a a symptom of my burnout and that was one of the strategies that I used. I thought, no, enough. I, you know, it might be a very, very late diagnosis, but I need to know for me. I need to know so I can live my life really fully for the rest of it.

Rwy'n meddwl am yw'r effaith o'r menopau sydd wedi'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'

Do you think because we don't talk we we haven't had many uh people on the podcast so far who have been able to talk about the post-menopause experience? We we Very much talk about perimenopause, people who have gone through menopause, but when we're talking about the post-menopause period. Burnout. spoons and all of those things.

You have to really be seen and and b if you are burnt out or shut down, then it would be very easy to disappear, I think, and for other people to start to make decisions on your behalf.

oherwydd mae hynny wedi'i ddweud yn ymwneud â'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn i'r gyflawn some some drugs which I never really took because I just couldn't face it and they didn't make me feel better anyway. So I I just didn't want to keep on going round that cycle. And um so it was to make sure I was. giving myself the best possible treatment, even if others couldn't. Um

ac mae'n cael ei wneud yn ei wneud â'r hyn, y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd y gwirionedd Hugely, hugely important.

Um, because this is about understanding yourself, isn't it?

No wish to continue to be like that. The other thing that occurred to me when I was going for my diagnosis was that I've always felt I was a bit uh was different. I felt there was something that I'd never put a name to it. I knew there was something. But I almost wanted to know. I wanted to know the shape of the gap between me and what the rest of society says is normal. I wanted to understand that gap. And um

Mm because I felt it would would ha would help me to deal with it. Whilst I was pretending there wasn't a gap. I couldn't actually work out ways of avoiding the gap. I I don't know if that makes sense. But um but I wanted to understand how far adrift I was from what the rest of society and I've got big issues with this but But uh how far adrift I am from what the rest of society thinks is in avertic commas normal.

with her about it. But um but for most people Um it's it's beyond their experience and it's down to their willingness and openness, I suppose, to accept me for who I am, even though in probably in their eyes, me having a label makes me slightly different.

Oh los is it? Uh what do you experience?

I know you wanted to talk about your son soon, as you were talking about your experiences. Today here you are coming to terms with your own diagnosis. Yn ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r amser

because both of them were I were identifying as autistic and had openly talked about it with their friends. And so In the end, we decided between the three of us that I I would I would be the one to go through, go for a for an assessment first. We identified somewhere not far from where I live that does autism assessments. And I phoned them up and they gave me the usual um the the you know, pre pre kind of screening.

um talk and and so on and said yes it looks like it's worth you coming for your assessment and then On the d the d uh about two two days before my assessment was due, this was w we were still in semi lockdown and my son was living in another city. Um and he had ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud.

about his artwork, about his friendships, about all sorts of things that were happening in his life. And I just really I I I mean I would yeah, I was I was broken, so broken. We were all broken by this and I had that feeling That I had a bit of a uh I had a real choice. Either Heartbreaking thing. was gonna make me close down again and I was just gonna sew myself up or I was gonna open up.

and really explore everything about my life, my artwork, my um my my my autism, my everything. I I felt I to close myself down would have been the end of me, I think, and I felt I really needed to. to to explore. But I cancelled that appointment because it was way too soon. I I couldn't couldn't go through with it.

And I left it for th three years before I could go back and get the assessment, which is maybe why it's even later than it might have been. Um Uh yeah, I I was so heartbroken by the loss of him and so I suppose even now it now that I have the diagnosis myself. so disappointed at myself that I didn't know. And yet when I look back and I've looked back at the history of autism which I lived through my work and through my knowledge of autism.

back in the eighties and nineties. That that wasn't what it was. We none of us, none of us. Me, my daughter, my son, none of us fitted that the that that profile. So that's been I think the hardest bit of it to know. And I just wonder I I this to me is is a huge sadness for my son, of course. And my daughter who's lost her lovely brother. But um but how many people undiagnosed have ha um because they've been undiagnosed have have have been lost to us all?

just because our understanding of autism is so poor. So so kind of two dimensional.

And one of the big problems I came up against, I I decided to go privately because I felt, well, who's gonna prioritise a sixty eight year old woman anyway? And if resources to provide um di uh diagnosis on the NHS are limited, then I would much rather people, younger people, would have that opportunity. And I was in a position to pay for a diagnosis. So I did go privately.

Um family members are approached, parents are approached to give the sort of 360 view. And I have no you know, my parents are long dead. And I was an only child. I have no siblings. Um, I have cousins, but none of whom knew me well enough when I was a child to be able to remember me. So uh I really had to work hard, very, very hard, at trying to remember and unearthed some memories that I'd really buried, really buried.

Quite a while. The first part of the assessment, I think I underestimated how much I needed to bring to it extra, because nobody else was going to. Unfortunately, the psychologist who assessed me. um you know took my my word for what I was well telling telling him because there was nobody else to verify it.

Um well School was a real A real problem to me. Um I I managed, I I I think I managed to get away with school, but I was so, so anxious. And nobody saw that anxiety. So I w would go and I would be anxious about everything and then I would have a lot of time off sick for various reasons. But then I'd have to jump in again. And so school was a a big problem to me. Um there there are some Yeah, and I and I think that that's a good thing.

I almost normalized that level of anxiety then. I uh so when I w found myself in stressful jobs later on, that was just normal. You uh you go through life. Feeling anxious surely, doesn't everybody? And then, you know, occasionally you realise that everybody doesn't. But I worry uh sorry, this is slightly off the point, but I worry about my heart. I mean I know that anxiety does does have you know, d l prolonged anxiety does affect

your heart. And I think, gosh, you know, what have I done to my heart over the years? And with no understanding of how to how to stop it, how to stop being an I've tried everything. But anyway, that I go slightly off the point.

then you've got to question, haven't you, the knock on effect to your immune system. And perhaps burnout, the the the constant cycles of burnout that we experience in our lives as as autistic people. Perhaps that's our own it's our body's way of screaming enough of saying, you know, I've had enough. I need to shut down, I need to shrink my world, I need to Do as little as I can outside of what it is that I need until I can face the world again, until.

You know, maybe it's some kind of automatic thing that happens for us. Um

Um and so this isn't in no way a criticism of of them. I know I was loved. Um, I also know I wasn't the child that they were expecting. Um, the one that had meltdowns over seemingly insignificant things, like a change in routine or even a change of root. through on the walk. Um and these things I I remember vividly and David I've I've kind of parceled them away somewhere and and plowed on, pretending they didn't happen almost. And part of the assessment process, I think, was Honoring that.

But I was I really wanted to know for her sake what was going on then for her and why she struggled so much and how brave she was.

because one school holiday we had some relatives staying. I think they were skirting around me. I think my oversensitivity was a an issue then. And where should we go? Where should we go? And in the end I thought to myself, well, the the school playing field would be great because I love it there. I've got say that's a safe space. I can remember going.

So there's a group of different people, none of the usual scenario, the school other school children weren't doing what they normally did. I was there in the holiday with a group of people that weren't usually there. And when we got there, I had a complete meltdown. even though it was my special place, but everything about it was different that day. And I can remember one of the adults from the family group.

Saying, you're such a wicked child, you're so horrible to your mother, you're so selfish. And I can remember hearing this and just feeling completely. I I you know, I didn't really understand what had gone on, but I knew I hadn't done anything out of malice. I just was completely out of my depth and and incapable of coping with that amount of change.

And that really that really stuck. That really hurt. And I think that was probably one of the pivotal moments when I r really started to um to mask far more.

uh a hoarder. I'm not a hoarder, but I've kept quite a lot of things that were my parents or I've inherited from other family members or that my f son left and I haven't sorted through. Those are really I I struggle with chaos and I found I've built chaos around me. And one of the things that I thought might be happening was because I'm beginning to start to shift some of those boxes and some of those things. And I think what was happening was I s because I was so

uncertain about who I was. I hadn't very little s sense of self. I thought I might find clues for who I was in some of those boxes, I think. But now one of the other shifts since the assessment is that I I am beginning to develop a sense of self. And so I might I I can start to get rid of things that are um

I I I was never quite sure that might that might be crucial. That might be the crucial bit of the, you know, the that piece, that that jug or whatever that I remember from my childhood. That might give me some slight insight. And it sounds um it sounds odd, maybe, but I think I was afraid of m of throwing away something that might help me to understand a little bit more about myself. But now I have the diagnosis. I I think I'm more ready than I ever have been to get.

get rid of stuff that is no longer serving me well. Um because I do really crave an ordered, quiet. stripped back, uncluttered environment. Um and and I, you know, so that that I've really struggled with.

it it really strikes me that Mae'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau'r brofiadau And work out if I need them or I don't need them. And actually, now that I've processed it, I don't need that anymore. So thank you for sharing that insight. Because it's uh Yeah, it's a really enlightening part of the process.

Uh that we that we go through and what and what we've got to work through. And there's so much, Sue, that I want to talk to you about in this episode, but I'm absolutely conscious of time that we don't have all the time to I might have to get you on for a second.

a second instalment, but one of the things that I absolutely want to cover um is your career because You you you've you've had this this incredible career and you've worked with autistic people um throughout your career. Do you want to touch on some of that and just What happened in your life and your career?

So I I did do a a f a four four year honours degree course and really struggled again, really struggled to I had no sense of self, I had no sense of that that transition into a university setting was really hard and I didn't thrive. But yet again it's that thing where I just pushed through it and there were lots of times in my life when I could have thought, no, this is too much. I'm not gonna do this. But I had no other clue as to what I might do instead. So I I pushed through that.

And that then qualified me to go and get a PGCE, postgraduate teachers qualification. Which I did. And then I taught for one year in a mainstream primary school. um, which didn't go too well. I I clashed w with the headteacher. I then got a job in uh as a head as as an art teacher i i in a slightly bigger school. And I really I I was I again a pat my pattern has been really good for the first year or so and then deteriorating relationships and kind of missed expectations and so on.

So after three years I knew I had to get out of that place. Even though I knew I was teaching well, I was well liked by the children, but I couldn't manage that. school situation again. I kind of thought in my naivety that maybe being on the teaching side it might be different. But I I I still didn't manage um education from the from that side either. Um, but I w I had specialised in art and I really, really liked the kids who were turning up in the art department in breaks and lunch times.

Um, because they were struggling elsewhere in in the curriculum or in the school and wanted somewhere quieter to be. And I thought, yeah, these are these these are the that this is the group that I could work with.

Um, but about a week or so after I went for my visit, I uh somebody phoned me up from from the hospital and said, Look, we're really desperate for a teacher. Would you be interested in in coming to work here? And I said, Yes, I was so keen to get out of the mainstream setting I was. And everybody said to me, You are utterly crazy. You know, why would you give this lovely job up for something that's so

so unpredictable. Um and I I really jumped at it. Um and it was there, uh it was early eighties and it was there That I first learnt about autism because the psychiatrists and psychologists who were running the unit. had picked up on autism as a as something that, you know, that was relatively recently, I think um had been translated from the from the German. I I think it was relatively recent then, but in the UK. And they'd started diagnosing one or two of the of the young people in the unit.

And not I I I mean I stayed there for about seven years until the unit closed. And although it was a really difficult, very, very challenging environment, I absolutely loved my job because I was working one-to-one, small groups with people for whom education had completely failed for whatever reason. Head injury, um Tourette's increasingly um Asperger syndrome and autism.

Um, there were ex-offenders there. It was a real mixed bunch of people and some very violent behavior on occasions. But there was something about it that I absolutely loved. And I also remember thinking

And so when that place closed down I was in line for a job at a brand new school for children with autism as w as it as it was described at the time. And I was given the headship. Amazingly. So from art art school to to special special school head w i is an od odd odd I mean I couldn't have planned the career.

Again, it I would I loved this job too because Um and so we were we were receiving children from all around the country, Scotland, um all around the country to come here, and they were really the kids that had fallen through every other net that there was. And so we started with very few staff and very th few children and gradually built up. I was um absolutely certain that the behavioural approach was not what was going to be.

uh used in this school, which surprised some of the people who'd moved from that other the psychiatric hospital with me to the school. But I just knew that that with autism it just was totally inappropriate. And I I spent a lot of time uh tr with staff training, um, because I knew we had to get the ethos right. We had to respond to these children. in a way that was sympathetic, keep them safe, but was sympathetic. So a lot of my my work initially was about

Talking about what the behaviour was for, that it wasn't naughty, it wasn't uh acting out, it wasn't oh the other word, attention seeking. I hated that um. It this is not attention seeking well in a way it is, in a way that it uh but it it warrants attention. We need to understand what the behaviour is telling us. Because a lot of the children were nonverbal and their behavior was the only thing they had to to to communicate with us.

I loved that job so much and I really empathized with those children. And that's and the and somebody asked me several years later what it was that I felt most proud of. about i in i in that work. And and it was just that. I the the ymwneud â'r ethos ymwneud â'r hynny'n ymwneud â'r hynny'n ymwneud â'r hynny'n ymwneud â'r hynny'n ymwneud â'r hynny'n ymwneud â'r hynny'n gweithio. Um

Rydyn ni'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd.

pebble in the pond, isn't it? You never quite know where the ripples ripples do go. But uh yeah, I I I I think somewhere deep inside me I I had such a kind of empathy with with those child with the children that were being referred who Who had been Well, we had been failed by education. And I thought at the time that we were This would be the way forward. And then I hear on the you know, so many stories now that the the education for for people who don't fit

Don't tick all the boxes, don't fit in the mold, don't don't you know, the the it seems to have gone backwards in in many respects. So I thought I felt we were on a you know on an upward curve, but it's all seems to have sadly gone backwards.

And we keep reinventing the wheel constantly. And as you say, we haven't Education is still failing, uh, young autistic people. We don't seem to learn, and there's so much that that we could learn from actually autistic people who have Rydyn ni'n cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod yn cael eu bod

looking forward because you've talked about work, you've talked about your retirement and looking forwards, what you'd said in your email to me. And that's this is another thing that really stood out to me when you when you wrote to me. Was how acutely aware you are that being one of a new cohort of late-diagnosed older adults.

And on a personal note, you're going to write a self-portrait. And I this is something I want you to share with our listeners about a the idea of what a self-portrait. And what what you want to do, this plan that you're hatching with care homes. Tell us more about.

vision of being back in a school setting where you can't make those decisions for yourself. And I'm thinking, oh gosh, it's going to come full circle and I'm going to find myself. Well, I may not Touch wood I won't. But there must be lots of people already in those situations. And uh m sitting with I don't know, with jumpers on that they've been dressed in in the morning with labels, you know, uh in the back that would drive me nuts. But who would understand that? Who would understand it?

Um and yes the the television's entertaining everybody else. So you know why why why not you? And it just occurred to me that It certainly wouldn't be a critical visit, but I I I I thought I might well make contact. I haven't done this yet, but with with some local care homes, just to see if it's even on their radar.

if if they're they've experienced anybody and if they haven't, if they're even aware that there will be people coming up through the system who have got a diagnosis and if they do, what on earth will they How will they respond? So that occurred to me. And then I thought, well, it would be so nice to be able to write something. That wasn't a passport, that wasn't a statement of well-being.

but was a self-portrait. And I I I started because I'm an artist now, I started thinking about portraits and thinking about how portraits of somebody else usually uh They th th there's usually an agenda attached to them. They're usually to um to flatter or maybe politicise somebody. But when you look at self portraits, they're often much more raw, they're much more honest.

And I and I s started I've I've got a little notebook. I always take a sketchbook with me. But when something occurs to me I've started writing it down. Something that would really matter to me if I if if if I couldn't have it, something that would make my life so much sadder. We've talked already about the the natural world. And I think if I didn't have access to proper green spaces.

Uh I don't mean just looking at it out as out of the window, but feeling the wind and and feeling the grass and and and hearing the sound of the wind in the trees, all of that. that I want to write down in my self portrait, that is important to me. To certain qualities of sound that are important to me, to certain colours that might be especially pleasurable to me, but things that nobody else will know and nobody else will be able to say on my behalf.

Because well what I'm am concerned about, I think, is that I might one day be in a situation where I'm not able to say that colour is really distressing to me. Oh that noise is really hurting me. That texture, that taste. So all of those things. So I'm I'm starting and I'm not far on it yet, but I'm just starting to gather those elements that would be a self portrait of what would make my life

more lovely or more difficult. Those things that nobody else will be able to say. And hopefully if I could go to a situation where I'm not able to speak for myself. This could come with me and and and uh the people working with me m will at least have a chance. And I I know. gosh, carers work so hard. And this isn't about asking for extra things. It's about just recognizing that this particular person

will probably be much harder to manage if you can't can't find these these these these things for her. Um I can I can imagine I mean I've I've been in those care homes where You you hear the screaming woman. And I'm thinking, gosh, I would scream if I had to listen to that noise. Or or if I had that discomfort, you know, that that uncomfortable jacket on. Um but who would know that? Who would know that?

Um so it's it's it's it's about that. And the other thing and this is I'm I'm not a medical person at all, but I really, really wonder and I would love somebody, not to take we s research away from any other aspect of autism, but I would love to know what what the relationship to autism is to other comorbidities that are particular to older people like Alzheimer's, like dementia.

and how that interplays because I think there's a huge amount of work that will eventually come because all of us are getting older. I'm afraid to tell everybody but We are all heading this way. And um uh yeah, uh that would be that would be wonderful. But but the the self-portrait, I'm I I it's it mostly for my own peace of mind, but I can't think of another document that will say it from me. And I need to start doing it now because when I need it, it will be too late.

So it's a a at the moment it's a really pleasurable um activity, just to gather those things that give me joy and those things that would really stress me out if I found myself in in those scenarios.

ychwanegwch, a sut rydych chi'n ei wneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ymwneud â'i ym a sentence or a paragraph or an entire story about what autism is because this is yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw.

So much of it it happens inside of ourselves. And the only time people see that. is when the world becomes too much. or when our bodies scream enough and and they see something like the children that you you worked with in in the psychiatric ward in in in school settings that you were working in. people not understanding around us. So this idea of a self portrait.

You have this, you you you have this knowledge about yourself. You have this language now. And that language and knowledge has not only allowed you to clear all these boxes of stuff and start this process of clearance. But it's allowing you to sit. In a room and paint your self-portrait in all the colours that you need it to be so that somebody else can see you. And I think gives me goosebumps talking about this.

So if you could find a way, Sue, I know you're doing this as your own project, if you could find a way of creating a workshop. An art workshop for older autistic people who are at a similar age to you, who are having this discovery about themselves, which there are so many in our late Discovery Club community. Imagine the difference that would make of having their own self-portrait.

change change that for a for us for us all. So wow, yes, that's a that's a really interesting proposition and but but you know not everybody uh not everybody uh writes, not everybody uh paints, not everybody Um there needs to it needs to be accessible to everybody to do in the way that they feel is is best for them and will fully express what it is that that that That is them. That is them. Whether, you know, not just the beautiful bits, the raw bits, the unhappy bits, the the difficult bits.

It's all of that. It could be poetry, it could be written, it could be painted, it could be sewn, it could be woven, it could be any of those things.

Well, I'm going to pause here. There are several questions that I have not asked you. But we have run out of time soon. And I and I hope that I hope that you've got across everything that you wanted to say in the episode. And um Yeah, uh your story is just you are fascinating. Your story's fascinating and um to have the opportunity to to give you the space here to share it with us. Um I just want to say a real big thank you.