Laura: Hello and welcome to The Neurodivergent Teens Podcast
(Music)
Hi everybody, welcome back to this episode of The Neurodivergent Teens Podcast.
I’m Laura.
Kirsty: I’m Kirsty.
Lila: And I’m Lila.
Laura: And in this episode today, we're going to be talking about
some of the challenges that we have faced and overcome.
as neurodivergent individuals.
So, Kirsty if I can start with you, what would you say has been
The biggest challenge for you to overcome that you would associate
with being neurodivergent?
Kirsty: For me, the first thing that comes to mind is school
and learning and academics, I mean mostly because that's been my entire life
at the moment. I really, really struggle academically. I have dyslexia as well,
which is a common trait alongside ADHD
which is not supportive when it comes to schooling and all sorts.
It caused a lot of frustration through my school years.
It was so frustrating to be working the same amount of hours,
putting in the same amount of effort as my peers, but getting
far less and worse results.
So for me, especially when I was younger and didn't
quite understand ND and also didn't have any diagnosis,
it was quite an overwhelming time not being able to
reach the goals, ‘cause I [have] such a high expectations of myself.
Laura: So I think what's really important to say Kirsty is
that although you have struggled with academics and with learning,
you’re at university now…
Kirsty: There was a point where I thought I shouldn't even apply because I
thought I couldn't even do it, so it's
quite weird that I'm over halfway now to
completing a full degree in business and law,
which just sort of blows my mind sometimes that I'm actually here and
doing it, but it's taken a lot to get here, and I think it's really important
to recognise that this is a, I'd like to say common thing among ND people, because
going through school is definitely a really challenging time for many many
different reasons. But, I do want to mention the ways in how I combatted that…
Laura: Yeah, that’d be helpful, yeah.
One of the things that was amazing for me… So me and
dyslexia means I can't speak other languages. I've really
struggled with Spanish and French at school,
so I managed to completely get rid of those subjects,
and it was amazing, because it meant I could focus and have
a lot more time on maths, because maths is my,
oh, it's my weakness, it's my strongest weakness.
So I spent more hours, because if you don’t pass maths the first time,
you have to keep retaking it, and I did not want to do that at all.
I did pass, barely, but I did do it, but
having that flexibility with subjects was amazing,
and I also got extra time in exams, I got external tutoring…
There [were] lots of ways that I could support myself
to get my academics, but yeah it wasn't an easy thing at all,
but I managed it and now I am at uni, so it can work.
Laura: Yeah, I think you're walking, living, breathing proof Kirsty
that your neurodivergence hasn't stopped you from doing what you want to do.
and that's because of the support you've had in place
because of the level of understand that you've had [from] people around you I guess,
and I think the other thing I just wanted to ask you is
would you say that your experience of learning at university
has been easier than your experience of learning at school?
Kirsty: Oh, a 1000%, because when I started university,
I had a piece of paper acknowledging me, and
went on medication, and that's what changed it for me,
and I was recognised a lot more, having a diagnosis,
and it means that my support now at uni... I get similar things
like extra time and all sorts, but having that in place now, with a
real structure, its been 10x easier than school.
I've enjoyed university, and I didn't enjoy school.
And I never thought I would say that.
Laura: That's so good to hear, and I do hear generally that
universities are usually very very good at supporting neurodivergent students,
which is fantastic.
We're going to talk more about education, aren't we, in one of the other episodes,
but, I think one of the other things which is great about uni, is that
generally you're doing something that you really love.
You've generally picked a subject that you think, yeah I wanna learn
so much about this, and you're really interested in it, and
those subjects that you found so challenging and hard at school,
like you don't have to ever think about them again.
Kirsty: If someone gave me a GCSE science paper or maths paper now,
I couldn't get 1 mark on it, I've completely forgotten all of it.
But I don't use it!
Lila: It's all gone!
Kirsty: Yeah, it's completely wiped from my memory!
Laura: So Lila, for you, what would you say has been the
biggest challenge that you have faced, linked to your neurodivergence?
Lila: I think its similar to Kirsty, kind of like the inverse.
Like I didn't struggle with the academic stuff,
but I did struggle with the social side of school.
And it's still something I'm like reconciling with today,
in that it was really difficult for me to know who I wanted to be
because I masked so heavily.
And that masking has meant that... I continued to mask
like outside of school, and then after school had finished.
Its taken me like quite a few years to take that mask off,
and it's tough, and whilst there are some benefits
to being able to mask really well, like
I can fit in in neurodiverse spaces quite easily,
I script so much, like copying my work colleagues, so hard,
and that's great, because obviously you have to use the same scripts
again and again with the students.
It can be really tiresome just going
"Oh yeah, mhm", "Oh yeah, that's crazy", like in conversations with people,
who you have no idea what to say, but just you mask
and it makes interpersonal relationships and friendships very tricky.
Kirsty: Exhausting.
Laura: I think that the young people that I work with,
friendships is something that comes up a lot, and
the difficulties with making friends, maintaining friends,
the demands of friends...
Lila: It's like a need that you have to fulfil,
but you keep going back because you need a social life.
Laura: Yeah, I totally get that.
We've touched on rejection sensitivity dysphoria
in some of our other episodes, we're gonna do an episode
completely on rejection sensitivity dysphoria, but I think that
was one of my biggest challenges actually, when I was growing up.
It really influenced my friendships, and it really influenced my relationships as well.
One of the things that I say to the young people that I work with,
around friendships particularly, is focus on the quality, and not quantity.
And it's better to have 1 or 2 really good friends,
that really understand you, compared to like being really super popular,
and having loads and loads and loads of friends, y'know that...
can often be a recipe for disaster I think.
Lila: Yeah, I've got that recently, like I've finally found a group
of friends who live near me,
and because they're so easily accessible, we just meet up sometimes for fun,
and it's extremely comforting, and I get to go home,
it takes me like 15 minutes to get home,
and sometimes they're busy, and I say no problem,
'cause it doesn't matter, 'cause I don't have to travel all the way there and back.
It's so easy.
Laura: One of my favourite expressions related to friendships,
and something that I have to sort of remind myself of, even now...
In my life, I've had radiators, and I've had drains,
and I have to make sure that I surround myself with the radiators,
and sometimes, one of the challenges I've had is not being
able to cut the drains out, knowing that somebody's not good for me,
that the friendship or the relationship is quite toxic,
but finding it really difficult to sever those ties.
So something else that I think is really really important for us
as neurodivergent people, I think generally
where we face the biggest challenge is where we are
expected to fit into environments that are not adapted for our needs, and
we've already touched upon school, education and I think
y'know, school and education is a brilliant example of
an environment that just simply isn't right for a
neurodivergent person's needs a lot of the time.
Are there any other environments that you can think of
that you think it was just the wrong environment,
it was just the wrong people for me to be around?
Or the opposite, where have you found where the right environment,
the right people for you?
Lila: Well, I find the workplace to be quite challenging.
The best workplace I've ever had was when I was working
as a music teacher, part time, for a year or so,
and it was literally just me, and then like all the students in the class,
and because it was just me, I felt so in control,
and I felt so relaxed.
Then, I'm working currently as a TA, and I do love that,
especially because I get to spend that time with the kids,
and I get to interact with them, but it is difficult
sometimes being around other adults or teachers who are neurotypical,
and I have to mask.
Laura: I was doing a presentation online, it was for
a corporate company that wanted a presentation on neurodiversity, and
it was an hour and a half, which is quite a long time,
and in the Q&A, I completely zoned out, and I got
distracted by my phone, and they asked me a question
and I just had to say "really sorry, I completely
zoned out there, that was ADHD in action, would you
mind repeating the question?"
And they thought it was funny, thank goodness, but
when you're ADHD it is such a challenge to sit and
focus and pay attention, and it's really hard if its things
that you find... I'm not saying I found the training
on Monday boring, it wasn't boring at all, but it was quite a long time
to sit and focus. It's almost impossible for me if I'm in a boring meeting.
But even going to the cinema, sitting in the cinema is challenging.
Kirsty: I will avoid it and sort of wait, if I can,
for things to come out on Netflix, or whatever, because
I just can't sit through a film. I need to pause it. Yeah.
Lila: Yeah, I skip like, I get bored I keep skipping forwards.
Laura: Yeah but you can't do that in a cinema, can you!?
Lila: No, that's true.
But then you go with friends and make silly jokes with them.
Laura: I like to watch films but be on my phone at the same time,
'cause then I don't have to apply my attention just to one thing.
That's challenging, but it's also really challenging for my husband,
he gets really cross with me, he's like
"can you just focus on the thing we're watching"!
Lila: I know what you mean! I do that and I hate it, it's really annoying.
Kirsty: I'm the exact same, I use my phone for everything,
like playing a stupid game that requires no effort or attention,
but it's how I can focus on whatever's happening in the background,
but then you think that... it can be almost recognised as being rude,
or ignoring for anyone else there, but the reality is
this is how I'm concentrating.
Laura: And I think that's really important, isn't it.
I think a lot of the time, people think that we're not listening, and
we're not paying attention, 'cause we're not looking at them,
or I can listening to things that are going on around me, but
be writing or whatever it is, and then people are like
"oh, you are paying attention".
We're gonna talk about hyperfocus, aren't we, and
monotropism in our next episode, but I'm either properly
hyperfocussed, and then that's a challenge, sometimes getting me to
stop doing the thing that I'm interested in...
Or if I'm not interested, it's like, "aargh, its so hard", it's like wading through treacle.
Another thing that I found, and still do find really challenging now
is my organisation, like planning, so I tend to over-plan,
and over-organise myself, so that I am organised,
but that can make me feel quite stressed and anxious,
and I'm just wondering what your thoughts are on that?
Lila: I know, I understand that, like in the work week,
I have to plan work, and then I have to come home and I have to
plan all the dinners, I've got to do a load of exercises and training,
and then I've got to make sure I go to bed on time, and if I
don't do all of that, then the week falls apart,
but if I do all of that, then my brain falls apart,
so I have to balance between professionalism or like total brain mush.
Kirsty: I think I've mentioned before how organised I am, uh
to the T, like everything, if you could
put my brain into a filing cabinet type thing, like,
I have everything written down in multiple places,
because I have to, 'cause, like you said Laura,
if I'm not writing down everything in a specific way,
if my to-do list is not in 6 different categories,
and for what I'm doing every hour of the week,
literally, I just won't do anything, 'cause I can't achieve it.
But also, my memory is horrific, and I just don't remember
anything I need to do. So, it's a great thing
being forced to be that organised, but the problem is
if I miss something of my to-do list, or I'm in a
situation I need to put something on my to-do list, or my calendar,
but I don't have the chance to do it right that second,
it is stressful from the time I leave the meeting room or whatever,
to go back to my computer to do it,
because I'm focussing so hard on remembering it.
Laura: I totally get that Kirsty, and I get so worried that I'm
gonna forget things... do you know what I've started doing recently
which actually has been really, really helpful, is
someone sent me a little sort of gift pack thing, and
in there were these tiny little Post-it notes,
they're like little squares, and as soon as anything pops
into my head that I need to do, I just
write it on the Post-it note and stick it on my desk,
or stick it on my laptop.
Lila: Nice, yeah, like a little notebook, like...
Laura: They're tiny, they're like about a CM, like CM and a half square.
And you can have them in your pocket as well.
What I learn to do, I will sit in meetings, this happened
last night, I was in quite an important meeting,
and someone said something which triggered a thought
of something else that I needed to do, and then
I'll sit in the meeting, and I'm like "I cant focus
and I can't concentrate, 'cause I've remembered the thing
that's really important, and I'm gonna forget that..."
So I literally just grabbed the Post-it note, wrote down
what it was, stuck it on my desk, and then I'm like "OK,
I've parked that, I can come back to the meeting now..."
Our brains are like a million miles an hour, jumping
all over the place, I think it's just finding really simple ways
to just kind of like capture the thought before they disappear off again.
Kirsty: I have the exact same thing, you can't see it
but I'm showing Laura I have this whole thing, I've got
a full box of Post-it notes. I do not leave the house without Post-it notes.
Lila: They're multicoloured too!
Kirsty: I know! They're amazing.
But I have Post-it notes and pen with me in all of my bags,
everything, all my pockets. The amount of times I've
washed a pair of jeans with Post-it notes still in it is insane!
But I am the exact same, I have these things everywhere I go,
because it's like my backup, and I have Post-it notes everywhere,
which is actually sort of annoying because mess stresses me out,
but if I don't write something down, it will disappear for ever and ever.
Laura: I describe it as a vapour, it kind of like comes into your head,
it swirls around a little bit and you've got limited time
to grab it and bottle it before it just swirls out again.
So, one of the other things that we wanted to talk about
around the challenges that we've expereinced being nuerodivergent
is also the challenges that we experience getting our diagnosis.
And it sounds like for all of us,
we spoke about this in one of the other episodes about
how life-changing our diagnoses have been and
how positive they've been, but I just wanted to ask
if either of you did experience challenges around your diagnosis,
or even accepting your diagnosis, was there
any kind of negativity around that?
Kirsty: For me, I think the biggest challenge was being so young
at the time. I started attempting when I was like 14
to try and sort of get something because up until that point,
I was just sort of labelled things, like anxiety, or OCD, or things,
which I knew there was more to it than that,
but because I was so young, I wasn't paid attention to,
and sort of felt belittling a lot of the time,
patronised, because I was so young, and it was like I was doing it for attention.
That's how it felt for years. And having to fight for yourself
when you're so young, and ignored, is exhausting,
and feeling like you have to grow up quicker than you should have...
Feel like I lost a lot of my childhood because I was too busy
focussing on trying to get a diagnosis.
Laura: Do you think that's partly as well Kirsty, again
I think there's a challenge around a lot of the myths that exist
around what autism is, what ADHD is, like even dyslexia...
It's really interesting what you said there.
People thought you were sort of attention seeking, and
We've already talked about how much you struggled,
do you think that was because perhaps your teachers
just were unaware of how ADHD presents in girls?
Kirsty: Definitely, because I think the biggest thing is
I was a really well behaved student.
Laura: OK, that's really interesting.
Kirsty: When it comes to behaviour, that's one of the biggest stereotypes,
is if you're ND, you are misbehaved.
Laura: You should have been flipping tables.
Kirsty: But I wasn't, I was like the perfect student,
I was quiet, paid attention, did my homework, all of it.
But because I was an average grade, because I wasn't standing out
to the extent that I would stereotypically need to, to get looked at,
I was just overlooked. Then I think just the biggest challenges
were having to go through all of the systems such as
CAMHS and various other support networks, which
I didn't find helpful at all, and yeah, it's just sort of
fighting, fighting for yourself. It took me like 4, 5 years.
Laura: What about you Lila, what were the challenges that
you feel like you faced in terms of getting your diagnosis?
Lila: Well for one, I still don't have an autism diagnosis,
and I probably won't indefinitely. And that is kind of one of the problems
is the diagnosis process itself, like the autism call I had
to see if I was autistic, see if I am officially, was I think 45 minutes long,
and I had to do it in my boss' car, 'cause I was still at work.
I was very stressed.
The reasons I wasn't given a diagnosis were hardly conclusive,
it was like, oh, "patient has attempted to get a job,
patient has attempted to have relationships", and
it was like, "oh OK, well, therefore..."
Laura: Terrible!
Lila: Um, so one of the major flaws for me was just getting a diagnosis
in the first place. And I ended up getting an ADHD diagnosis,
which also makes sense, but like I know I'm autistic,
it makes sense, looking back at my past, my present and probably my future,
but I'm not able to get a diagnosis because of the limitations in place.
Laura: Self identification is so, so valid.
Lila, I think it's fair to say that even though you don't have a
formal diagnosis of autism, you are able to make adjustments
for yourself...
Lila: Yeah, absolutely.
Laura: ...Show kindness to yourself, because you are autistic.
There might be people listening to this who are
diagnosed, there might be people listening who are in the process
of getting a diagnosis, and there might be people,
I hope there's people listening to this, who don't
have a diagnosis, but self identify.
And I think self identification is so valid...
I don't have a diagnosis of autism, but I recognise how
I have some really significant autistic traits that
really impact me, and understanding that has been
really really helpful for me.
Lila: For a lot of us, getting a diagnosis isn't an option,
I don't have access to a doctor to recognise it for me
Laura: It's shocking to me, Lila, that a medical professional
in this day and age, would consider that you might not be autistic,
or that you're not autistic, because you have a job and
you have a desire to make friendships, I mean that
to me is appalling, but it also again, it's one of the challenges
that you face as a neurodivergent person that there are so many
myths attached to being neurodivergent.
Kirsty, you experienced it at school, if you'd had a teacher
who really understood how females with ADHD present in a learning environment,
perhaps you wouldn't have had to have waited all the time that you did
to get your diagnosis.
Kirsty: Even just understanding masking.
Laura: We couldn't possibly cover every challenge that we've faced
in this episode, but I think what we really wanted to share was
some of the challenges that we've all faced, but also
that we've all overcome, or are still overcoming.
Lila: Yeah, or just dealing with.
Laura: And, we'll always have our challenges, I think for me
the thing that has supported me the absolute most
with the challenges that I have faced, and continue to face
is being able to share and surround myself with people
who really get it.
Kirsty: Yeah.
Lila: Yeah, I'd say the same. Being neurodivergent
amongst other neurodivergent people is extremely liberating.
Laura: And also being able to self advocate, say
"I'm really sorry, that's something that I'm gonna really struggle with because..."
That can be with friendships, you know I know that my friends
who are neurodivergent know that they can say to me
"I can't do that, it's too loud, it's too noisy, there's too many people..."
Whatever the reason is, I understand, but similarly I get that from them.
And also being able to work in an environment where you feel that
you're supported as well, and people understand you
is really positive and really helpful.
Kirsty: Definitely.
Laura: OK, is there anything else that either of you want to share
before we wrap up this episode?
Kirsty: Don't have too much doubt.
It's very easy to quickly go into the "I can't do this because I'm ND".
Let's try and always look for solutions, because it's different for everyone
but you never know what you could come across which could
support you in so many other things.
Laura: Mmm, yeah. Anything Lila that you want to add before we finish?
Lila: Yeah, I'd say something similar to Kirsty,
like definitely recognise your limitations too, that's what gets me through,
is stopping when I need to stop.
Kirsty: Yes.
Laura: Yeah, be kind to yourself.
OK, thank you so much Kirsty and Lila for
once again sharing your incredible insight and experiences,
and thank you for listening, and we look forward
to chatting again on our next episode
of The Neurodivergent Teens Podcast.
Thanks everyone.
(Music)
