Latest / NDV Podcast: Neurodiverse Voices Connect / From Diagnosis to Self-Compassion: Kay’s Story of Healing and Embodiment

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From Diagnosis to Self-Compassion: Kay’s Story of Healing and Embodiment · NDV Podcast: Neurodiverse Voices Connect

0:14
Welcome back to the Neuro Diverse Voices podcast and hello
0:19
season 4. I'm your host, Andrea Costa, and
0:24
I'm so grateful to have you on that side.
0:27
Over the past three seasons we've shared honest, powerful,
0:31
real stories from neuro divergent people, their
0:34
families, educators and mental health researchers, and together
0:39
we've been part of a growing movement towards understanding,
0:44
acceptance and embracing difference.
0:49
This isn't we are going even deeper.
0:52
We will be. Exploring late diagnosis,
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masking, burnout, menopause, mental health, and how neural
1:01
divergent intersects with identity, culture, and lived
1:07
experience. You'll hear from creative minds,
1:11
parents, and most importantly from neurodivergent people
1:16
themselves in all their complexity and brilliance.
1:21
So whether you've been with us from the very beginning or this
1:26
is your first time listening or watching, welcome This space is
1:32
for you. Let's begin season 4 of the
1:36
Neuro Diverse Voices podcast. Hi everyone, today's a very
1:47
special day because I know my guest since last year and I
1:52
learned a whole lot from her already and I'm pretty sure all
1:56
of you will learn as much or even more because I'm also
2:00
learning new things today from her.
2:03
So she's the development lead at Neuro Diverse Connection and she
2:08
specialises in body, mind, diversity, embodiment, and
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spiritual needs. Hi, Kay.
2:16
Hi Andrea, I'm delighted to be here and to to connect in this
2:21
different environment with you. Thank you.
2:24
It's I'm very grateful to you for you to being part of of the
2:29
Neuro Diverse Voices podcast and I'm very excited to find out
2:32
more about you. So why don't we start with you
2:37
telling us a bit more about your neuro divergent and how you had
2:43
your diagnosis later in life? Absolutely.
2:47
I'll try and keep it short. So yes, I am very late diagnosed
2:52
autistic and when I got my diagnosis I think I was 47.
2:58
They also said you meet the criteria criteria for ADHD, but
3:02
do you want to go on the waiting list?
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And I said, yes, but we're five years in longer and I don't know
3:09
whether that will happen in terms of discovery over it.
3:14
My children were late diagnosed neurodivergent in sixth form.
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And it was pretty clear to me that I was also neurodivergent.
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And when I discussed it with with my family and with my
3:26
husband, he said, yes. You know, I have never doubted
3:32
it, but you know, you are who you are.
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But it felt important for me to pursue the diagnosis, to
3:39
validate the challenges I'd had in my life.
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And also because I knew that I wanted to work in neurodivergent
3:48
advocacy and it felt really important for me to to go
3:51
through the services and the NHS diagnosis and experience that.
3:57
Yeah, it felt really important as part of the future work that
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I've gone on to do. Yeah.
4:03
Thank you for sharing and what signs did you notice?
4:06
Let's be a bit more specific if you don't mind now what signs
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did you notice in yourself that made you realize?
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Besides, you know, there's many parents like myself going
4:15
through the same. But were the what were the
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specific signs you noticed? So special interests, passions,
4:25
deep passions, monotropic nervous system based in nervous
4:30
system. So interest based nervous
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system, it's like total immersion at the exclusion of
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everything else that was around me when I was working with my
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passions. And but for me predominantly
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it's the hyper sensory experiences.
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So sensory processing difference in terms of everything's big and
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amplified and emotionally as well.
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So I'm not, I don't, I'm not a lexothemic.
4:58
I have hyper interceptive awareness that means in internal
5:01
awareness and, and, and so I had a very outdated view of what
5:09
being autistic was. And so it hadn't connected the
5:13
dots. But obviously as my children
5:15
went through the diagnostic process and I read about it, I
5:19
was like, oh, especially as it presents it's, it's, it's been
5:26
missed. I think in, in women and girls
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that I kind of added the dot joined the dots and, and it was
5:33
the sensory processing aspect and the deep feeling and the
5:36
hyper empathy, which we don't always see in the diagnostic
5:40
criteria as it's presented. I I started to make those
5:44
connections. Yeah, many of us used to have an
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updated definition of of autism until very recently.
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So it's it's not surprising that again, many of us go through
5:58
this when our children are are diagnosis diagnosed.
6:02
So how did getting the diagnosis helped you with yourself
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understanding? That's a good question.
6:16
I have had a mixed a mixed journey post diagnosis.
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It helped me with my understanding in that it's
6:22
explained the misdiagnosis and the challenges that I'd had
6:28
where there seem no apparent reason for it, like the chronic
6:32
burnout, particularly the the, the catastrophic burnout that I
6:36
had when I was in my late 30s and early 40s.
6:41
And then it has, it has actually helped me to de pathologise
6:48
myself. So it is who I am.
6:53
I'm not, I don't have a disorder.
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I'm not deficient. That's how I see it.
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I'm just, I'm just autistic. I'm neurodivergent.
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My neuro type is different. So I don't look externally for
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an explanation of the something. There's something in me I need
7:07
to fix. It's just who I am.
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It's taken me a while post diagnostic to get to that
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position. Diagnosis.
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Sorry, but that's where I am now.
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And and there's a liberation that that that I can't change
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this. I don't need to do any more work
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on myself. Yeah, but it took a while to get
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to that. There's a lot of grief.
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Yeah, that's actually my next question.
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What, what did you feel about it?
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Do you feel grief? So I I think some relief
7:33
eventually, but were you at some point in denial, for example?
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Yeah, I, I, I, when the practitioner said yes, without a
7:44
shadow of a heart, you meet the criteria, I said, are you really
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sure? Are you absolutely sure?
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So there was a denial and a doubting of it.
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And then immediately post diagnosis, there was a lot of
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shock when I read some of the statistics about the health
8:01
outcomes. I can still feel the emotion
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around that and, and the impact it has on our physical health as
8:08
well. Yeah.
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And I think they're still, they're still a grieving there.
8:15
That, that, that, that is the potential outcome of, of being
8:20
autistic or, or can lead to that.
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So there was a grieving process, the normal disbelief and
8:27
bargaining and an issue. And no, I'm not.
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And all the rest of it. And then eventually the
8:32
acceptance that final stage of, of grief has allowed me to find
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a liberation in it. So yeah, it's been a huge roller
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coaster of emotions. Yeah.
8:42
And what helped you most in the early days after finding that
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you were neuro divergent? I was really lucky that I was
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already connected with neuro diverse connection.
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I if if I hadn't had that community that that group of of
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neuro divergent people that I was connected with, I may have
9:03
got lost actually in searching for the correct literature for
9:07
me to make sense of my diagnosis.
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But being part of neuro diverse connection, I was immersed in up
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to date research, other communities that were in that
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advocacy realm. And that was the most supportive
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network in in my coming to terms with understanding myself.
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So important, isn't it? You know, you could think about,
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you know, there's many tool kits that we can use and, and the
9:37
strategies, but I think the community that surrounds us is
9:41
is key for us to, you know, be just who we are and be ourselves
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and and support and and the neuro divergent community is is
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incredible. So yeah, definitely.
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And you mentioned, for example, chronic burnout.
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So when you look back, are there moments in your life that make
10:05
more sense now to you? I think you kind of answered
10:08
this, but with the chronic burnout, were there any
10:14
diagnosis, for example, of of depression and anxiety?
10:16
Were you feeling like that's before getting to the stage of
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of burnouts every time it would happen?
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Yes, I can see lots of mini burnouts so around exam periods
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at school and then in university quite a major burnout in my
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final year and in at each of those stages I was seeking help
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but not really get but getting those misdiagnosis in the mental
10:50
health arena and realm. But the chronic, the worst
10:55
burnouts, so that mid late 30s, early 40s, I'd had the, you
11:04
know, the complex trauma diagnosis, it actually led me
11:09
into understanding when you're being neurodivergent.
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But the trauma was as a result of being neurodivergent and not
11:18
having my kids met as well as some, some of the issues.
11:22
So I can see that and also how I was diagnosed with fibromyalgia.
11:26
So I had a chronic pain and diagnosis which is the the pain
11:32
is manageable now if I meet my sensory needs.
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So I can see how all of the other diagnosis were not having
11:40
my neurodivergent needs met, because I don't.
11:44
Which is very common. Yeah.
11:45
And I don't really, I wouldn't say I would meet any of those
11:48
criterias now really, if I live as my body mind needs me to
11:53
live. Yeah, definitely.
11:56
And do you think the way your your neuro divergent shows up is
12:01
different from how it's usually described?
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Without yes, without a doubt, Yeah, without a doubt.
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I was going to say that, but I think, I don't know.
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I can't make a judgement for anybody else, but for me that
12:18
body mind piece, that connectivity of that, this is a
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whole holistic experience of body and mind together and
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working in union. We we're seeing that more coming
12:31
in the literature and the writing, but it's not fully
12:34
reflected I don't think in the diagnosis process or really in
12:39
the services understanding. Does that answer the question?
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Yes, and it's not just the services like you know, until I
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took the neuro divergent well-being approach course that
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we will talk about later. I never thought about it.
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You know, yes, I, I knew that mind and body are connected, but
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I think it's about having that understanding of your, of
13:02
yourself. And, you know, I still don't
13:04
practice most of the things that I learned with you because I
13:08
find it quite difficult, but at least you are aware of it.
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And I, I think that's, that's very important.
13:15
Yeah. OK, Now moving on to another
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topic that's quite important, related to neural divergent and
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there's I, I don't see it being as talked or, or yes, I, I don't
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see much conversation about it yet.
13:36
Is menopause and I'm curious to know how did perimenopause or or
13:44
menopause affect you as a neural divergent person?
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I, I actually don't know where to begin with my answer with
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that one, because every day there's, there's a different
13:55
impact. So just yesterday I was at the
13:57
dentist with gum challenge and, and he said, Oh yeah, that's,
14:05
that can be a hormonal experience.
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But because I'm hypersensory the the sensation of of the gum
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difficulty is like amplified. Yeah.
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I don't see that being talked about.
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I didn't even know it could affect your guns menopause.
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It's just in the general health literature.
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But certainly then you bring it into the kind of neuro divide
14:28
virgin arena and there's very little.
14:30
There's some research starting that we're starting to see at
14:35
NDC, at Neuro diverse connection.
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But how has it affected me? Well, hormones have always been
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my menstrual cycle has always been challenge a challenge.
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I've been the opposite to what the literature says.
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So I'm I find oestrogen incredibly challenging.
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I need less oestrogen and HRT than I need more progesterone,
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which is not what typically AGP will prescribe.
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And, and I and I found a menopause.
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I was very lucky. My local GP was menopause
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trained and said, Oh yes, I'm seeing a pattern that in
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menopause neurodivergent people might need more progesterone,
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but there's no literature out there, she said.
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So, so hormonely. I've always struggled with
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cycles because I feel everything big, the mood, just regulation.
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And also the, the sensory experience of menopause, the,
15:40
the hot flashes, the burning skin, it's just bigger.
15:45
But I think the, the biggest impact is that just to reiterate
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what I said, I think neurodivergent embodiment
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doesn't necessarily follow the pattern of the neuronormative
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lens that we've taken on menopause research.
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So until we have that, I don't think we're going to have a full
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picture because I have lived that experience that the typical
16:06
advice hasn't been helpful at times.
16:10
Yeah, well, let's continue talking about it and hopefully
16:14
inspire. We actually have a conference
16:16
coming up soon. So that's going to be a good
16:19
opportunity to to bring that up to the conversation with the
16:22
mental health researchers. So let's see.
16:26
And was it a turning point that helped you realized, well,
16:31
you're neurodivergent? No, because I think from my
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understanding you were diagnosed before or was it during
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menopause? It was during peri menopause.
16:42
Yeah. Yeah.
16:44
And the, the burnout was also exacerbated by incorrect hormone
16:50
protocols. So I was, I'm going to share
16:56
because it's fine. I had been given a Marina coil.
16:58
So I was, I was, but I, my estrogen and progesterone levels
17:02
was so finely balanced that it swung me, I think into early
17:07
menopause because because when the coil was removed, I was able
17:11
to balance out for a while and then go into natural
17:14
perimenopause. So because of the waiting
17:19
process of the, of the, the waiting list to be diagnosed, I
17:23
went in onto the waiting list, I think when I was 37, a little
17:28
bit later, 39. And then it took I think about
17:30
five years for me to get through because we had COVID through the
17:33
diagnostic process around that. I've probably got my timeline
17:36
slightly wrong, but. Yeah, yeah, it's quite
17:39
interesting because I I too had a Marina coil.
17:43
I removed it now and I feel a lot better, but I was told when
17:49
I replaced it that it, it's actually amazing during
17:52
menopause that it reduces your symptoms and you know, you
17:56
should keep it on. And I'm so glad I removed it
17:59
because I feel so much better with myself.
18:03
I was having loads of low moods as well just before the cycle.
18:07
After the cycle it was yes. So I, I, I see the, I understand
18:13
now, I wasn't expecting us to have this conversation because
18:17
this happened a few weeks ago or a couple of months ago that I
18:22
removed it. But yeah, I, I, I totally agree.
18:25
And I, I had my lived experience on on to that as well.
18:31
So what helped you manage menopause and the
18:34
neuroleveraging traits at the same time?
18:40
Being relentlessly persistent with the GP to get to the right
18:44
HRT protocol, I'm now on kind of the best that the NHS can
18:49
provide. So bio, you know, the
18:51
biochemical or whatever it is identical eutigesterone tablets,
18:56
which is a really good progesterone for me and
18:59
Estrogel. So but they tried to fob me off
19:01
with antichesis and like just thatchers, I'm allergic to the
19:07
plasters and various things. So that helped me getting the
19:10
right I need. I could not have got through it
19:14
without HRT. And I'm, I use a lot of holistic
19:17
practices, as you know, Andrea, but now I needed that help and
19:22
developing a good relationship with my health provider and, and
19:26
naming the neurodivergence this you might not see in me what you
19:31
would expect to see and, or typically see.
19:33
So work with me here and listen. And then recognising that
19:40
executive functioning is affected and so is kind of
19:48
energy pockets and, and burnout and we have to be more well, I
19:51
found I had to be more gentle and compassionate and even more
20:01
attentive to, to to the my body needs during this time.
20:06
Because it affects the neurodivergent traits or aspects
20:10
that I have, but primarily it's it's energy and executive
20:13
functioning that I find are affected.
20:15
Obviously mood, we're always keep in our mood, but they're
20:19
the two that I found the biggest change, you know, so brain fog
20:22
of menopause, it really you have brain fog when you're
20:26
neurodivergent if you're heading to buy and out, don't you?
20:28
So it's like, what's the which of the two?
20:31
And how can I support myself holistically through this?
20:34
Yeah, yeah. And what would you, what do you
20:38
wish that more people understood about how menopause and
20:42
neurodivergence can interact? Because again, it's not much
20:47
talked about yet. Not yet.
20:50
I think the, the biggest gift we could give neurodivergent people
20:54
as researchers and health services is to understand the
20:57
impact of their hormones on their whole body mind experience
21:02
and that neurodivergence can be atypical to what we've already
21:06
know. So what the advice I would give
21:09
is, is, is mental health services, are you, are you
21:13
talking about cycles? Are you, are you even
21:16
recognising someone's hormonal profile and how that impacts
21:20
and, and how you're supporting it and how the hormones you have
21:23
might, might actually be at the detriment to that person?
21:26
Because I, I mean, I don't have the answer to this because I,
21:30
the research doesn't give me the answers.
21:32
I just have my lived experience of it.
21:34
Yeah, good. So again, let's keep talking
21:38
about it and hopefully we'll start seeing some innovations
21:43
in, in research in the future. So now moving forward to the
21:48
Neuro Divergent well-being approach training, which was
21:51
what connected both of us. It was a course that I took last
21:56
year and I really enjoyed it. The first, my first question is
22:00
what has inspired you to to create the the Neuro Divergent
22:03
well-being approach course through Neuro diverse
22:06
connection? Yeah, sure.
22:10
So Jill, who is the director at Neuro Diverse Connection
22:13
connected me with me through some creative writing work that
22:16
I'd done and I'd written a book called Mentorship with Goddess,
22:21
which is which was like a holistic, A spiritually lens
22:26
well-being approach for for women and girls like a rite of
22:32
passage. So through menarche first period
22:35
of three through your perimenopause journey and, and
22:38
we had a discussion about whether some of the content
22:41
could be re recreated in a way that was evidence based and also
22:51
could speak more, less spiritually and but actually
22:55
speak to neurodivergent people. And I said, absolutely, I'll
23:00
give this a go. This is when I was an associate
23:01
with NDC and, and then I created the course and, and we did a, we
23:05
did a pilot run. And I've learned so much through
23:11
each iteration of how I I've honed it and honed it and
23:15
tinkered and, and, and moved some of the content around to
23:19
meet the needs of the community. Yeah, now.
23:23
And now it runs as a holistic well-being approach for
23:27
neurodivergent people. Lived experience.
23:29
It's an experience to share model, so you really come to the
23:35
course to experience and to be curious about your own
23:38
well-being as a practitioner or as a carer or as a new divergent
23:41
person so that you can then take it out and it's mind, body,
23:45
spirit in it's lens. Does that answer the question I.
23:50
Think it does very well. So you, you talk about going
23:59
back to what you said, you know, about being more aware,
24:03
especially with chronic burnout and, and, but you talk about
24:08
less is more and going at a, at a gentle pace is why, why is it
24:15
this important in, in the work and, and through throughout the
24:18
course? It's something that that we
24:20
learn. Yes.
24:23
So part of my liberation, I keep using that word or route into
24:33
being more accepting of myself and more well-being more well
24:36
generally is that I, I instead of coming top down at towards
24:43
becoming well, I went bottom up. So nervous system approach and
24:48
then taking a nervous system lens on well-being and the
24:52
nervous system lens is all about slow going slow and steady.
24:58
Because if we do anything too much too soon, too quickly for
25:01
our nervous systems, it takes us out of our, what's called our
25:05
window of tolerance, our zone of regulation, our capacity.
25:09
And, and it takes us back to square one or even back minus
25:14
square, square one, if that makes sense.
25:16
So, so less is more entrepreneurial divergent
25:19
people. That's vital because we may need
25:22
more processing time, more space generally, and so I don't always
25:29
get it right. Sometimes I go too fast myself,
25:31
especially if I'm nervous or or anxious about like something or
25:36
want to get it right. I can go too fast or excited.
25:39
I want to share information. Generally slow and steady, less
25:44
is more is holistically best for our body minds as neurodivergent
25:49
people and is the root into Wellness.
25:52
Not so easy in the structures that we live in.
25:55
That's what I was thinking. You know, we live in such a, an
25:58
overwhelming world full of information.
26:02
And yeah, after you with, with increasing life demands at some
26:07
point, you know, after you become parents and, and you
26:10
know, you have a household to manage.
26:11
And then you also, I'm, I'm talking about myself now.
26:14
And you also have your career and you also have your passions
26:16
and your projects. So it feels sometimes like we
26:19
are in automatic pilots mode and it's very, very difficult to
26:27
calm ourselves down. So yes, as I said, I learned a
26:31
lot with you, but I'm still working on practicing and
26:36
applying. Me too and you too.
26:38
I I openly say this and I'm facilitating.
26:40
I do not get it right. You know, I try to practice what
26:44
Ioffer to people, but if I'm, if I'm in a monotropic tunnel, I
26:50
get a hyper focused tunnel, I will, I will not move my body as
26:54
I'm supposed to and I will go faster than my body can.
26:57
I'm processing faster than my body can take.
27:01
So it's there's the joy aspect of that, but there's also the
27:04
demands coming externally at me. And, and that's pretty part of
27:09
my learning with this is that I, I really wanted everybody to
27:13
experience this, but I have a much more realistic lens on what
27:16
is manageable for people to receive.
27:18
When I'm teaching this content, I've got so much more compassion
27:24
for people's what capacity of what they can take from, from
27:29
the learning and what they can apply.
27:31
And so I'm a lot more gentle now.
27:36
And it's great to have your, your honesty about it.
27:41
You know, it's not like you, you are kind of teaching us how to
27:47
do it and you know, saying, oh, because I do all of this very
27:51
well. No, I think that's one of the
27:53
things that that makes a big difference in, in, in the course
27:58
as well is, is to have you as, as the lead.
28:02
And that's actually my, my next question goes to differences.
28:06
So how? How is this course different
28:08
from any traditional well-being or mental health support
28:11
courses? Yeah, sure.
28:14
So I endeavour to the best of my ability to remove the the power
28:18
dynamics and, and that I'm the experts and have it all sorted.
28:23
And I and I know everything and, and I'm teaching.
28:27
It's much more of a circular structure and we're Co creation
28:30
together and sharing. And I'm offering you a lived
28:32
experience. So and the model is, as I've
28:36
said earlier, experience to share.
28:38
So we're, so it's an experiential people I think can
28:42
struggle with this, that they want someone to give them
28:44
answers and passively absorb. It's not a course to possibly
28:48
absorb content. It's, it's for you to engage
28:52
with it at your own pace and be curious.
28:55
It's, it's, it's a, it's an investigative course about
29:01
yourself. It's very meta, isn't it?
29:03
It's you, you're observing yourself as you go through it.
29:07
So that's what I endeavour to do.
29:09
It's not therapeutic. I'm not a therapist, so I bring
29:15
myself to it and, and again, that can be different to what
29:20
people have experienced before. I think.
29:24
Yeah, I hope that's your experience.
29:25
Anyway, yes, it was definitely. And have you received any, any
29:30
feedback? Can you share any feedback that
29:34
you've you've got on the course from participants?
29:37
Yeah, we, we do get mixed feedback and and so so the on
29:42
this, there's a side that people that are very, you know, want a
29:48
training model. It's it's not like that.
29:51
It's it's not kind of I'm not doing to you.
29:55
And then we have the feedback also that this is something I've
29:59
never experienced before. I'll take just one part, just
30:03
feel like it's the missing piece.
30:06
I hadn't even considered I had a body.
30:10
Oh, my, wouldn't you know, I didn't think I was creative.
30:13
That really, you know, resonates for me as a next teacher.
30:21
Oh, I'd always, I thought because I was a Fantasia, you
30:23
know, I didn't have a mind's eye.
30:25
I couldn't access these, these ideas.
30:28
So, so yeah, that that's usually the the feedback we get.
30:33
Yeah, that's really good. And I can just add on to the
30:37
positive because as I said, to me, just just being aware of all
30:42
of this, and I really like the fact.
30:43
So I learned so many terms like aphantasia, and I'm going to try
30:49
to say this word. I'm never able to say it.
30:51
Alexis Simia yeah, that, yeah, I wasn't aware of before.
30:58
So I like the fact that you start with the basics and you,
31:04
you, you teach all the, the terms and all about neuro
31:09
diversity and then we start delving into ourselves.
31:12
So there's a lot of positives. And I would recommend everyone
31:16
to, to go and have a look at the Neuro Diverse Connection website
31:19
that I will link and look at the next cohorts because I know they
31:23
are they are on at the moment. And also I just wanted to share
31:29
with you that actually our group, we stayed in touch.
31:31
So we have a WhatsApp group. And yes, we, we are a bit of a
31:36
support community to, to one another.
31:39
So I hope that makes you happy. It really does.
31:42
Yeah, because of the boundaries, Obviously, I said I, I, we can't
31:46
oversee it. And, and so often I don't know
31:48
what happens next. I'm really like you're you're,
31:51
you're a fantastic group. So I'm delighted.
31:54
Good. Thank you.
31:56
And what are your hopes for the future of of the neuro divergent
31:59
well-being approach, of course. My hope is, is that we start to
32:07
bring. There's not going to be any
32:10
major change without research. I know that.
32:14
So my hope is that we start to see a movement to bottom up
32:20
approaches and then research to neurodivergent support and, and
32:25
service provision. And so this isn't just the
32:29
sensory environment. This is about relationships and
32:33
the primacy, the importance of relationships for well-being and
32:38
and regulation. And so that's my hope.
32:41
I'm hoping there's something on the horizon coming with that in
32:44
my own work and at NBC, but also just anybody who's in research
32:49
listening, if this is new, then then if, if that can be
32:53
considered, that would be a great hope for the future.
32:57
Yeah, yeah, definitely. OK.
32:59
Now moving on to living, working and embodiment.
33:04
How does your neuro divergent shape how you work and support
33:08
others? So, so how it works, I feel like
33:16
I manage myself, my work and being neurodive, my body being
33:21
neurodivergent, like I've got three things that and obviously
33:24
my family and everything, my own children.
33:27
But yeah, it's, it's an added in.
33:33
In education, we call it the third curriculum.
33:35
So you have a neurodivergent learner and they're doing the
33:37
school curriculum and then they're doing, sorry, a second
33:39
curriculum. Then like trying to work with
33:41
the curriculum through the neurodivergence.
33:44
How it helps me to support other people is I, I, I really like
33:51
learning about how people think and I love, love learning about
33:56
what makes people tick and how their mind bodies work.
34:01
So it actually, I'm very creative.
34:04
I think in how I work with people and assume to the best of
34:08
my ability nothing and ask and and check in how how it when
34:14
we're relating and when we're working together, how it works
34:16
for them. Was that did that answer that?
34:21
Yes, yes, definitely. And I think it all goes back to
34:25
being curious. You know, many times I say this
34:28
and, and that's one of the things I've been learning with
34:30
my previous podcast guests and I say that it's not rocket science
34:35
to, to support neuro divergent. You know, if we think about
34:40
children in, in in school, for example, and the education
34:44
system, you know, ask and just be curious how you can support
34:50
whoever you're you're dealing with or, or supporting.
34:55
So yeah, curiosity is, is I think the foundation for for
35:00
many things and we shouldn't have to over complicate, which I
35:05
think we do a lot. And sometimes it's quite simple
35:08
to to be able to support better the neural divergent community.
35:13
Yeah. And what are some of your
35:16
favourites strengths that come from being neural divergent?
35:25
It's always difficult to answer this.
35:26
Question isn't it? It is I'm thinking.
35:30
I think for me, because I'm autistic, ADHD agility, so so
35:38
I've got these two sides to being neurodivergent of really
35:41
deep hyperfocus and absorption and flow states.
35:45
And then I've also got this agility looking at things that
35:49
are all different. If it was, you've got this, this
35:50
is basically my plan, these two strands.
35:53
And I think that is quite a for me can I can be in conflict
35:58
internally myself, but I think it gives me a strength.
36:05
Yeah. I've been able to really deeply
36:07
focus and then jump out and and look at lots of different things
36:10
and then go back in. Yeah.
36:14
I totally relate to that, even though sometimes I I feel more
36:20
like I could be on hyper focus for longer and when I have
36:25
interruptions, I really don't like it because, you know, yeah.
36:29
So it's one or one or the other. That's something I need to work
36:33
on on myself. But yeah, I, I totally agree
36:36
with you. And yeah, I'm sure you have
36:39
other amazing strengths, but I feel you.
36:44
It's quite difficult to analyse yourself and, and, and answer
36:50
strengths. Maybe if which is something
36:53
wrong actually, because if people ask you what what are
36:57
your weaknesses, you probably are able to respond quicker and
37:03
it shouldn't be like that. Yeah.
37:08
OK, So what helps you feel connected to your body and
37:13
grounded, especially on other days?
37:19
So my feet, I mean, I'm standing now while we're recording this,
37:24
but I, as I talk, I'm fully connected to my feet in the back
37:28
of my body. And the feet and the back of my
37:31
body are, well, obviously I'm grounding, but also the back of
37:34
the bullet body is reminding me to lean back, which is more of a
37:37
parasympathetic state than a activated state.
37:41
So, so, so that they are the 2, but but also I call it
37:49
practising the presence of pause.
37:51
So, so taking a moment to just stop for a second, don't always
37:59
remember when I'm in a monotropic flow, I will forget.
38:03
But trying to do that, but for example, in a podcast now it
38:07
it's always remembering to go even slower than what might want
38:12
to come out and deliberately doing the slow and steady.
38:16
Less is more. And and then, you know, I, I
38:24
swim, I I'm orienting now as I'm thinking I'm looking outside at
38:29
nature. I'm only just learning how
38:37
important rest is, even if I can't sleep.
38:40
So going into that lying down position, moving the body out of
38:43
the horizontal. And yeah, I just did.
38:51
Yeah, I think they're the main ones, but I guess also
38:54
hydrating, remembering to move my body.
38:58
It's actually quite basics. The the nervous system needs
39:01
very basic things, hydration, movement, checking in on
39:05
temperature, using the toilet when we need to, standing when
39:09
we need to. They're like the key basics
39:12
which is so hard to remember I know.
39:15
I know very well eating toilets, drinking, especially drinking,
39:23
yeah, I, I forced myself to go and, and grab a drink, but it's
39:27
not easy. But yeah, we it, it's about
39:32
being compassionate with with ourselves, which actually leads
39:35
to my next question. What does self-care and self
39:39
compassion look like for you now?
39:42
So I guess that all of these things that you just mentioned,
39:46
you were not doing them for a long time.
39:50
So how what impact do they have on your on your life now?
39:58
Yeah, you're quite right. I mean until.
40:00
Late 30s, I don't even think I realised I had a body, which is
40:05
what I hear a lot of people say. Even though it's big, I think it
40:09
was so big and overwhelming that I just cut it off and numbed out
40:13
and it kind of in terms of nervous system at a freeze
40:16
level. I, I think the biggest gift I've
40:22
given myself is an internal voice that is kind and it, that
40:27
took a lot of work. So come on, honey, you've got
40:31
this. Like I'll say that.
40:33
Oh, I know you, I know you're not ready.
40:37
You want to finish this, but realistically is that, is that
40:41
going to be helpful for your body?
40:43
And it's, it's the cultivation of that internal supporter has
40:50
been, has been really, really useful, helpful for me in terms
40:54
of compassion. But that voice comes from
40:58
slowing down the the body and anchoring into the body.
41:03
And because the voice of the mind is not unexpected, there's
41:12
a positive of it. We could do this, we could do
41:15
that. But actually that back of the
41:17
body voice, as I call it, is, I know you want to do that.
41:21
Well, could we do that tomorrow? There's like an internal
41:24
negotiator now. And that's helped me with my
41:27
compassion, the voice of my body.
41:30
Yeah, we all need to start listening to slowing down and
41:34
listening to our inner voices, especially to to slow down.
41:39
I agree absolutely. And I've, I've seen on social
41:44
media and we actually exchanged some emails about the ABA and
41:51
PBS campaign. So you you believe that these
41:57
can harm so, so these approaches maybe it would be good actually
42:01
to explain to the audience what what they are and what are your
42:05
concerns about them? Why do you think they will
42:08
change the the behaviour of of for near of near divergent
42:13
people? Yeah.
42:15
So if you want to look at the history and, and the position
42:18
statement of NDC, do go on the Congo website because it's the
42:21
research and, and is all of that.
42:24
But in a nutshell, and having trained as a teacher in the
42:27
education system and taught for 20 years, you are trained in
42:30
positive behaviour interventions and support.
42:34
So that is in a, in a nutshell, externally observe someone's
42:38
behaviour and use reward or consequence.
42:43
I'm not even going to use the word punishment, although ABA
42:45
was based on that reward rewards and consequence to externally
42:50
modify behaviour. So as a teacher, I'm thinking
42:54
like, you know, yeah, that works.
42:57
However, the question, the concerns that that I have and we
43:03
have at NDC is that what is working.
43:09
So is what is working is that there's an increase in masking
43:14
of neurodivergent traits. So externally there's a
43:18
normativism happening that the person is reducing stimming, you
43:24
know, not moving around in the chair and not showing distress.
43:27
Behaviours externally that are driven by a nervous system
43:30
response to threat in the environment, whether that's
43:33
sensory or whatever, if that's what's working, that's harmful
43:39
for neurodivergent people, so. Repressive.
43:44
Yeah. And, and it's, and we know from
43:46
the research that masking in which increases the risk of self
43:51
harm and, and, and distressed behaviour of all sorts and
43:56
suicidality and just love and yeah, it's catastrophic.
44:00
So, so the alternative will be let's stop the external gaze and
44:07
making judgements about what we see externally and be curious
44:10
about the internal experience of someone who's neurodivergent.
44:14
So relationship, we've already talked about this, what's
44:18
happening internally and building rapport and, and, and
44:23
Co creating ways of being together in our environments and
44:27
our organisations that meet the internal needs rather than just
44:32
doing to and modifying externally.
44:34
I hope that explains it. Yes, yes, that, that makes
44:39
absolute sense. And yeah, I, when I think about
44:43
my daughter, for example, she seems a lot.
44:45
And I just, I just find it beautiful and I wouldn't want it
44:50
any other way, you know? And I will never tell her, you
44:53
know, at the beginning, yes, when I was in denial and, you
44:56
know, I'll stop moving. Or when you have that
44:59
embarrassment face that you're not ready to accept it.
45:04
But now I wouldn't want her any other way.
45:06
It actually it's actually joyful to to look at all her steaming.
45:10
And we just need to change our perception.
45:14
And yeah, neuro divergent people and children more specifically
45:18
because they are growing up and and learning how to be in the
45:21
world. They should never be repressed
45:26
to to steaming and and having to mask so much to feed in an
45:31
education setting. And also I, I, I'm still reading
45:37
because I'm a slow reader. One of your books, I think it's
45:40
embodied education. Yeah.
45:45
So that there's a lot about this on their rights.
45:47
And I will, I will link the, the book on the episodes release as
45:53
well. But do you want to tell us a bit
45:55
more about that book? Because you wrote it with your
45:57
husband, wasn't it? Yeah, that was so.
46:00
We were both in education combine 40 years of
46:04
approximately 20 years each and and embodied education.
46:11
We can't say to research because it was informal views.
46:13
We gathered information via informal views, but it's a
46:18
vision for education. The way we educate that is
46:21
bottom up nervous system friendly, relationally based,
46:25
heart based, bringing together mind and body into the
46:28
educational environments and, and and and bringing back that
46:35
those strands of metacognition, intuition and instinct in as
46:39
ways of knowing. So we can know through our
46:40
minds, we can know through our bodies and we can also know
46:44
through our intuition, our sense.
46:46
And that's where the spirituality comes in.
46:49
And and if we were to Co create education spaces that allowed
46:55
for different ways of knowing, then creativity and innovation
47:00
would be sparked from it. So it's kind of a model, it's a
47:04
vision. It's been looked at by some
47:08
education researchers and the like.
47:10
We're so far away from this. But you know, it was a vision
47:14
and we wrote it really for ourselves, for our own, our own
47:18
kind of it's almost like a, Oh my goodness, what did we do for
47:23
40 years to young people on my word.
47:25
And then, and this is what we would have preferred to being
47:28
able to facilitate, which we did in our own ways in our
47:31
classrooms. But as a system it it can do
47:34
better. Yeah.
47:36
And so I, I guess that was one of the reasons why you left the
47:42
education system. I was lucky that I got voluntary
47:46
redundancy. So I had burnout and then I
47:50
ended up on, I was off sick. And then there was an
47:53
opportunity for voluntary Regency.
47:55
So that was, I couldn't have gone back once the once I
47:59
unmasked and realized who I was, I was like, that's just me.
48:02
I don't fit with that system. And and my husband also, he, he,
48:07
he, he was ready for a different experience.
48:11
So yeah. Everything happens for a reason.
48:15
Yeah, it it it took burnouts for you, but you're now in the in
48:19
the right place, so that's good. Now going to self acceptance, we
48:30
talked a lot about the body and you talk a lot a lot about the
48:33
body in your work. So what has helped you feel safe
48:38
and connected to your body as a neurodivergent person?
48:41
We might have covered this already, but is there anything
48:45
you would like to add? Yeah, I think the main thing is
48:56
kind of, well, listening and realising that it's not the body
49:00
isn't, isn't doing to me, it's doing for me.
49:04
It's telling, it's giving me messages and sensations that I
49:07
need to listen to. And yes, they're big and they're
49:10
amplified and I was fearful of it.
49:12
But, and it's an ongoing journey, reducing the fear of
49:16
these big amplified sensations and experiences that I have in
49:20
my body. And, and listening and trying to
49:24
work out what it's telling me has has made me feel safer.
49:27
As well as doing somatic work and resolving traumatic trauma
49:33
that was stored in my system at a embodied level.
49:35
Not just at a talking it through, but actually completing
49:39
the stress cycles and the trauma cycles.
49:42
That has all helped me feel safer.
49:46
Yeah, yeah. And in terms of somatic
49:50
techniques, is there any, any specific exercise or, or, or a
49:57
tool that you can share or you can recommend?
50:03
We just heard about how you ground yourself, you know, with
50:06
your feet. That's, that's very important.
50:08
But is there a sensory tool that you use often?
50:14
Yeah. So like like all of us,
50:16
headphones, your favorite scent, liberated blankets.
50:22
So we have the usual sensory tools, but the self holding
50:26
exercises of connecting to the body, which is actually the work
50:29
of Peter Levine who founded Somatic Experiencing and did his
50:34
PhD on on PTSD. Those self holding exercises are
50:41
so non evasive. They're not harmful to us, but
50:44
they start us to connect. I've just done them there.
50:47
That's basically it. They are the one doing that
50:51
everyday, almost as like we would brush our teeth,
50:54
eventually our hand, our whole, we start to feel safer with
50:58
ourselves. Yeah, that.
51:00
That is my goal too. Yeah, thank you for sharing.
51:05
You just reminded me of it. I had forgotten about it.
51:09
I need to start doing it again. I remember from the course it
51:13
was, it was quite, quite helpful.
51:16
So, yeah, thank you for sharing. OK, we are now approaching the,
51:22
the, the last, the last questions of of the interview or
51:24
the last section. I'm going to start asking a few
51:29
questions that are more about you and your, your supports.
51:32
And the first one is who is your biggest support on your journey?
51:39
Yeah, my husband. I thought it would be, yeah.
51:44
He, he has taken this complete journey with me and we work hard
51:55
at Co regulation and and supportive relationship, an
51:59
authentic relationship as well. And so without that, he, yeah,
52:05
he is my main support. And how do you treat yourself
52:10
with regards to your well-being? Again, I think we covered all of
52:13
this. You mentioned swimming, your
52:16
somatic experiences, but is there anything else that you do?
52:23
There's the nature as well, the walks.
52:26
The the the spirituality aspect for me, the spiritual, I meet my
52:32
spiritual needs regularly. So connection, meaning purpose
52:38
and connected to something bigger than myself.
52:40
So, so I have very, very specific, I meet my spiritual
52:45
needs through rituals, through earth based practices.
52:49
And that's a big part of of how I look after myself that I can
52:54
connect to something bigger than me, a purpose, my work, but also
52:57
the world, nature, other people. And remember that it's, however
53:03
much I get caught in my own experience, I'm actually
53:07
connected to something bigger. And and that's why for me,
53:10
spiritual needs is such an important part of well-being.
53:13
Not I'm not talking about religion.
53:15
I'm talking about meeting meaning, making, making sense of
53:19
our lives. Yeah.
53:21
It's quite easy when you hear the word spirituality that you
53:25
start thinking about religion, which, you know, for some people
53:28
that's absolutely that's going to be the the connection.
53:32
But yeah, I'm still, that's another thing I'm still trying
53:38
to, to figure out myself. You know, I, I understand, but I
53:44
don't think I'm spiritually connected in any way.
53:50
So we might talk about this later when we meet in person and
53:54
give me some tips. Sure.
53:59
And who would you say is your biggest inspiration?
54:06
Wow. You, I know I knew this question
54:09
was coming, but I'm going to say it's my children because because
54:18
of because of what? Because of them, them as
54:22
individuals. They're all so different.
54:24
I've got three children. They're all so different, but
54:27
I'll if I really, if you really listen to your children, they
54:29
can, they can help you grow. Well, I found I'm gonna only
54:32
speak to my own experience. If I listen to my children, I
54:34
grow. Definitely.
54:38
So what else? Yeah.
54:40
What else do you need? And it goes back to that power
54:43
dynamics that you were talking about earlier, right?
54:46
We tend to see ourselves as the adults, you know, when the the
54:50
person who knows best, but very often is the opposite.
54:55
And we should definitely listen to our children more, not just
54:59
in terms of learning, but in, in terms of of their needs.
55:02
Yes, they are immature because they are children.
55:06
Well, when they are younger. I know yours are adults already,
55:09
but but yeah, that's, that's great.
55:13
And it's, it's good to have a different answer on this, on
55:16
this question. Yeah, because I asked all, I
55:19
asked all my guests and everyone is very, I might need to
55:24
rephrase this question because it's quite difficult to have one
55:28
person has your biggest inspiration.
55:30
So well, you have 3 and yeah, that's that's beautiful.
55:35
And if you were a superhero or had a superpower, what would
55:39
that be and how would you use it to make the world a better place
55:43
for neuro divergent people? Oh my word.
55:56
So what? Who would it be?
56:02
I think so that kind of, I'm thinking of Superman really.
56:11
I mean, I don't, I don't, not really.
56:12
It's really hard question this because I'm not really into that
56:14
kind of fantasy stuff. But the thing I love about
56:17
Superman is he serves, so he uses his super powers to serve.
56:24
It's always beyond self with him.
56:27
And so he if I would, I would want that.
56:30
And, and what I would do it is to is to slow, you know, how you
56:36
can kind of like whizz around the world and slow down time.
56:40
So I'd just slow down time for everybody to give everybody just
56:42
a little bit more space and to support nature and the world and
56:48
and and the climate so that that's the my answer today.
56:51
It would be different on another day.
56:53
I. Know that's that's very, very
56:55
interesting and also I had another guest who who also said
57:01
Superman and he mentioned that he's from another planet and
57:06
therefore he feels like an alien on Earth.
57:09
So sometimes, you know, you hear from different neurodivergent
57:13
people that they feel alienated because they don't feel like
57:16
they belong here. So that's another connection
57:19
with, with Superman. So yes, very, very interesting.
57:23
But slowing the world down would definitely be a good thing.
57:28
When we think about COVID now, it's, it's not that long ago we
57:32
had the chance to slow down, but it feels like we, we don't even
57:37
remember that anymore. It's just everything goes back
57:41
to normal and we don't value the important things because again,
57:46
this world is, can be very, very overwhelming.
57:51
And I don't know how much you are into music.
57:55
Is there any, is there a song? I, I started adding this
57:58
question because I'm, I'm passionate about music and
58:00
there's, there's many songs that would capture my, my life
58:04
perfectly. But is there one for you that
58:07
resonates a lot with with your journey?
58:13
So the two have just come to mind there.
58:15
One is Ironic by Alanis Morissette.
58:18
Yeah, because there's a lot of I I've, you know, that kind of
58:21
like you have this and you have that and that kind of for me,
58:25
it's very much like I'm trying to move beyond the binary and
58:32
the and the polarities of things and that there's and that song
58:36
really kind of you think you've got the control, but then
58:39
something else happens. So that one, but also the sign,
58:43
the sound of silence. You know, it says hello
58:46
darkness, my old friend. For me, you learn most in
58:51
silence. I can connect to deep intuitive
58:57
senses through silence. I think we have a lot to learn
59:00
from the non speaking autistic community and those different
59:06
ways of knowing and and so less words for me has always brought
59:15
the greatest gifts and wealth and well-being.
59:20
And so, yeah, that's an important song.
59:25
And speech is not the only form of communication anyway that
59:29
would. Be a whole different podcast.
59:31
I'm really interested in that. All those are the sideways.
59:35
But yeah, I've I've, I've generally not gotten there
59:38
today. Yeah, but I like both, both
59:41
songs. Yeah, ironic.
59:43
Reminds me of my teen teenage years.
59:46
It was one of my favorite songs. And The Sound of Silence is
59:49
actually one of my daughter's melodies favourites as well
59:53
because they have a different version in the trolls in the
59:56
movie. Yes, they do.
59:59
It's, you know, Branch is a bit. So I don't know how much you
1:00:03
know about the trolls, but it's Poppy and Branch.
1:00:06
They are the main characters. Yeah, but he's a bit grumpy.
1:00:10
She's very positive and very bubbly and yeah, and he's grumpy
1:00:14
so he doesn't like talking. So she starts singing when they
1:00:17
go on a on a trip and. And then it it tells her to to
1:00:23
shut up, but she starts singing The sound of Silence and my
1:00:26
daughter loves it and she sings it even it's.
1:00:29
Brilliant. Love it.
1:00:32
Yeah. And if you had the chance to go
1:00:35
back in time, what would you tell your younger self?
1:00:41
Yeah, I've been asked this. The first time I was asked, I
1:00:43
got like, I was like, I could barely get the words out.
1:00:46
But yeah, I think I've I've got a little bit more resilience.
1:00:49
It would be there's nothing wrong with you.
1:00:52
Any age I've got back any age there is nothing wrong with you.
1:00:57
Stop searching and for a cure for yourself, because there's
1:01:01
nothing wrong with you. And what are your hopes for the
1:01:07
future in general? That we move beyond the word
1:01:12
supremacy. I'm going to pick up that theme
1:01:14
now, but that the only way of thinking and expressing and
1:01:18
communicating is at this level and through words, including
1:01:23
written words. And that we develop other ways
1:01:26
of, of communication, you know, embodied communication,
1:01:31
emotional communication, Co regulation, understanding that
1:01:35
our body communications interact, that we need to take
1:01:40
responsibility for our nervous system States and that we start
1:01:45
to create ways that are in the world healthy for our body
1:01:49
minds, all body minds, all neurotypes.
1:01:53
I think that is my biggest hope. Yeah, absolutely.
1:01:58
Those are amazing hopes for the future.
1:02:02
And finally, if your heart had a voice, what would it tell us?
1:02:14
Remember, remember, everything is interconnected.
1:02:20
So you, you connected to the world, you connected to the
1:02:24
person next year, regardless of what your mind has to say about
1:02:26
them. And So what effects one person
1:02:32
actually ripples out and effects everybody.
1:02:34
It's the golden rule, isn't it? Treat people as you would have
1:02:37
them treat you. It's, it's kind of that, it's
1:02:39
that, you know, it. It's we're all, everything's
1:02:43
interconnected. That would be what my heart
1:02:45
would say. Yeah, OK.
1:02:48
Thank you so much. It's been an amazing.
1:02:52
I got I, I lost track of time, I think.
1:02:55
Yeah, one hour and a few minutes or something like that.
1:03:00
And yeah, again, I'm very grateful for for your time today
1:03:04
and for sharing all of your live journey and your experience at
1:03:09
Neo Diverse Connection. And yeah, we will stay
1:03:13
connected. At least the two of us will stay
1:03:17
connected for sure. And yeah, thank you so much.
1:03:22
Thank you. It's been absolutely my
1:03:23
pleasure. Yeah.
1:03:24
Thank you so much for inviting me to be part of it.
1:03:27
You're most welcome. Thank you.
1:03:45
Thank you so much for listening or watching this episode of the
1:03:50
Neuro Diverse Voices Podcast. Also, a huge thank you to
1:03:54
today's guest for sharing their story with such honesty and
1:03:59
insight. If you found this episode
1:04:02
valuable, please share it with someone who might need to hear
1:04:07
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1:04:14
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1:04:17
You can find all links to everything we talked about today
1:04:21
in the episode description. This podcast is about
1:04:26
connection, community, and change, so let's keep the
1:04:30
conversation going. Until next time, take care, be
1:04:35
kind to yourself, and keep embracing difference.