Late discovery neurodiversity

There are many reasons why we might not discover that we're neurodivergent until later life. In this livestream I explore why, what happens, and what to do if this affects you.

References from the show:

• https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext
• https://journals.sagepub.com/doi/10.1177/13623613231173056
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195638/

Episode Transcription

So hello everyone, I'm starting a new series of live streams and this is the first one.
So what we're going to be talking about today is late discovery and neurodiversity.
I'm going to be covering what I mean by late discovery, why that's a thing, how peopleget overlooked, how people get missed, how you can end up in this situation, what theeffects can be, good and bad and the difficulties that can come with it and the advantages thatcan come with it.

And if this topic resonates for you, how you can explore this for yourself.
I'm doing this live so if you're watching live, please do ask any questions as they
come up and I'll try and take them on for you.

And before I get too much into it, this is a really personal story for me.
I was diagnosed with dyslexia as a child but that was all I was diagnosed with and it was only in the last few years at the age of 40 that I was diagnosed with ADHD and shortly afterwards with autism.

So I've kind of had this as a big thing for me and been processing all of this. So it's a really big issue. Now I want to say late discovery and language matters here.
So like it's discovery because yes, diagnosis matters, right, you know, and it's helpful for many people but it's not always available and it's not always something that we can actually achieve. And particularly for the reasons that we're talking about, if we're late diagnosis, we don't really kind of fit the models anyway. So we kind of have to figure it out for ourselves.

No one's pointed it out to us until we've reached adulthood. So we're like, oh yeah, okay, we have to discover it before we can even seek diagnosis if that's
viable and a useful thing for us to do. So that's why I'm using discovery rather than diagnosis. And what it means is essentially finding out your neurodivergent as an adult or finding out you have an aspect of being neurodivergent, you have a neurodivergent condition as an adult rather than as a childhood because in childhood because the kind of general expectation is that we're going to pick this up. It's going to be picked up at school or early on in our lives.

Now how big of a thing is this? Well research suggests that at least half of autistic people are undiagnosed and there's some emerging research that actually suggests that number might be even higher. So it could be between half, you know, the only half or maybe even a third or a quarter of autistic people actually have a diagnosis.
So late discovery is a really, really big thing. And this is true for a whole range of conditions.

Lots of us go through our lives assuming that everyone experiences the world the way we do. It's everyone's default assumption. And so what happens is it takes quite a lot to nudge us in that direction. One of, for me, my experience was I was, you know, I was, I was bright enough at school not to drop below the level that I got into trouble too much. So no one really picked it up and I was pretty normal by the standards of my family. It just turns out we're not particularly normal.
And so that was the thing that was that was really why I got missed.

Now, late discovery has has a range of effects for some people.
It's really, really helpful and can unlock a huge amount of stuff for others.
It's kind of neutral. It has some good and some bad. And some people actually find it quite difficult to discover, you know, they find that there's
an awful lot of work to do or that really that they get stuck in a label and that actuallyholds them back after they've been, you know, they've discovered that they've had this condition that they've got a condition.
So it's not all good. There's there's really mixed results about this.
But in general, it seems like the sooner that you discover your neurodivergent, the better things work out. So it's like being being diagnosed as a child is really helpful.
And the sooner in life you get that support, you get that understanding.
The sooner you can move towards living in a way that really suits you and works for you, which is what this is really all about.

Now, I want to talk in particular about why people get missed, because this is this is a really big thing. And I think, you know, for me, a lot of the the the experience of being diagnosed late has been why how did I get overlooked? You know, I've been been involved in this for I've been, you know, I had psychological assessments because of the dyslexia, ever since I was six years old.
And it's like, why did this get missed when in hindsight, it can feel so obvious?

So there are a couple of really big things that can get in the way of getting diagnosed or getting discovered or figuring it out yourself. One of the big ones of these is what's called non stereotypical presentation, which basically means you don't fit the stereotype of how the conditions supposed to show up. Now, this is a particularly big issue for women and girls with things like autism and ADHD.
And it's also a thing for for boys and men who have a condition that isn't that is gendered female and it's expected female. Now, this is a really big issue because the things just don't present the same way as they do in,
you know, things like ADHD and autism just don't present quite the same way in many women and girls as they do in boys and men, and they don't present the same way in boys and men and often in non binary people as well.
And there's a big intersection there. So, you know, just these they are expectations don't fit.

This can also happen when we grow up in a culture where our behavior is expected to be a certain way and where it just doesn't show up in. So the condition kind of gets masked and gets hidden by the fact that we just don't behave in ways
that are expected for that condition, but we still have the difficulties.
Another big area of this is contradictory conditions.
Now, many neurodivergent people have co-occurrent conditions.
We they happen together.
We have, you know, it's if you have one, you're more likely to have another than the general population.
But some of these kind of cover each other over and they can kind of co mask each other
and make it harder to discover.
This is particularly true with autism and ADHD.
So until, I think a little over 10 years ago, I think it was in the DSM five that you could
actually be diagnosed with both until then they were they were separate conditions
because the idea of them was so different that they just wouldn't occur together.
So if we grew up kind of sometimes being like stereotypically ADHD
and sometimes being stereotypically autistic, we might never have done enough
of the other to get spotted or it might have been said, oh, no, you can't be ADHD.
You're too careful or you can't be autistic.
You've got too many friends or you go out and do things or, you know,
and these are terrible cliches anyway, but these are the this kind of stereotypes
that lead to people getting spotted very often.
Another big area that can mask these conditions is twice exceptionality.
By twice exceptionality, I mean, being neurodivergent and intellectually
or creatively gifted, being brighter than most other people around you.
And it's not a moral thing or any kind of it's just just a way of being.
And if you happen to be this way, you tend to be able to kind of get along,
do stuff that you need to do and pass enough in school that you never really
drop out of things, usually until maybe quite often until university education
and you suddenly hit a wall where that becomes very, very difficult.
And then you don't have any of the tools to deal with it
because you've never really dealt with it.
You've always kind of just, you know, done whatever and worked your own way
and never really kind of engaged with the problems and the struggles of the thing
until it's overwhelming and overwhelmingly difficult.
So, yeah, so this twice exceptionality, because we can work around it,
can often be a big issue and cause people to get missed early on.
Another big part of this that can lead people to get missed is,
is that they're very high masking or high camouflaging.
And that means that we're very good at pretending to be different than we are
and hiding our experience of the world, hiding our way of being in the world.
And that can come about for all sorts of reasons.
But one of the big reasons is because we've had real struggles in the past
and we've had experiences, perhaps we've had traumatic experiences
that have led to us having to really be able to cope with stuff
and hide it to a very high degree.
And in some ways, that's useful and can fit in, but it's absolutely exhausting.
It's really tiring and quite often for a lot of us,
we learn to adapt in such strong ways that we can't really turn them off ever,
which leads to them being overwhelming and difficult for us to deal with and exhausting
and can we get in the way in our interactions with other people as well?
So I want to talk a bit about the late discovery
effects and what happens with late discovery.
Now, for a lot of people, particularly in this country in the UK,
but in many countries, actually, you'll go through the discovery process
and you might even go through the diagnosis process.
And at the end of it, you'll be like, great, here's your condition.
And if you're in one of the better areas,
there'll be groups you can join or some follow up or something.
But there's very little as an adult in terms of formal support
and help with how to really make sense of discovering
that you're neurodivergent later in life.
You know, it almost feels like we've fallen through the cracks.
And in doing so, the system just doesn't know what to do with us.
So in terms of the practical effects,
getting discovering your neurodivergent can actually be a really,
really helpful way to understand past experiences, past difficulties
and also past things that we've been really strong at unexpectedly,
but just really to understand ourselves in a slightly different way
and to be able to work with that better.
One of the very common experiences of being neurodivergent is
is finding out that like the standard way of doing this just doesn't work for me.
And that's that's a that's a really hard thing to work with when you're like,
well, what what do I do now?
I know that the standard thing doesn't work for me.
Having a condition that we know we experience things more like other people
means that we can narrow that search.
We can kind of filter down.
We can choose to try things that work for other people
who share our experiencing of the world and our condition.
And that can be a really helpful way of narrowing it down.
There's no guarantees ever with trying anything out,
but at least it means you don't have to do everything fully by trial and error.
Another big area of this is that you can get access to accommodation.
You can get access to help.
You can get access to support.
Very many organisations are available.
There are some things available to help you, particularly in the workplace
and that neurodivergent conditions fall as protected characteristics
for equalities legislation, for example.
So they are things that are something that can get you access to more support
should you need it, though many people's experience varies
and not everyone can manage to get that.
So it's by no means guaranteed, but it can often help.
I want to talk about the emotional effects of this as well,
because they can be really quite profound for a lot of people
and are really not spoken about nearly as much as I think they should be.
We talk about these conditions very much as kind of cognitive conditions
in the sense of all, it makes it difficult to do schoolwork
or it makes it difficult to work in an office job or whatever.
And whilst that's true and valid to some degree,
I think it's really, really important to talk about the lived experience
and the emotional aspects of this.
One of the big ones that a lot of people report
when they discover their neurodivergent is relief.
Just that idea of actually now I understand all these things,
all these things that I thought were really difficult,
were a problem, were something that was wrong with me.
That kind of falls away a little bit
and they can kind of relax into that feeling.
And that can be a really, really healing and helpful thing.
However, it's not all just relief.
Some people don't get a huge amount of relief from understanding it all
and being able to say that.
Some people experience quite a lot of anger
and there can be a real difficulty in why,
particularly with the late diagnosis, is I've struggled with this all my life.
Why did no one point it out?
Why was the help not available?
And it's a very legitimate feeling and a very difficult feeling
not to feel, I think, for a lot of us.
And to some degree, I think it motivates my own work.
It's like this is silly.
This is this was such a waste of my potential and so much struggle
and the waste of the great potential of other people around me.
Why did we miss this?
There's a very legitimate reason to be angry about some of this.
So that's definitely something that can come up for people.
And I think perhaps the last one and the one that I've not seen spoken
about nearly enough is grief is the sense of loss of sorrow.
The sadness, perhaps for the child that we were that suffered so much unnecessarily.
The sorrow for ourselves and our future plans.
Because one of the things that we do have to encounter, you know,
when we when we discover we're neurodivergent is that on some level
we are disabled, we have different abilities to others.
And some of those abilities might mean that some of the plans
that we held, the ideas we held about ourselves and our ambitions
and our expectations about the future might no longer be true.
And that is a source of a lot of grief and difficulty.
So that can be a real challenging thing to encounter.
And sometimes I think catches people by surprise
because we don't talk about it as much.
There is another big impact on relationships.
And this is all relationships.
This is both like including romantic relationships,
friendship relationships and working relationships.
People can you can encounter a huge amount of shift in your way of relating
and understanding. It can help hugely.
It can open up new aspects of relating and ways of better relating
tools you can use to help you with things that have never worked for you.
And it can help others actually understand you.
There's quite a lot of research to suggest that
when interacting with neurodivergent people,
other people find us better company if they know we're neurodivergent.
Because often we come across as slightly odd or off or not quite right.
It gives them a reason to understand that.
And that can that can help get over that discomfort
that some people feel interacting with with us.
So it can be really helpful.
One of the big challenges that does come up, though, is disbelief.
And the fact that it's not always believed, you know, or it's minimized in, you know,
and people can often really struggle to integrate it as part of their way
of seeing us as an individual, particularly if we didn't fit the stereotypes.
You know, if someone's stereotype of autism is either
Dustin Hoffman's character in Rain Man or Sheldon Cooper from the Big Bang
Theory, which is the two largest pop cultural references, depending on
someone's age, is if you don't fit exactly that stereotype,
they're not necessarily going to be able to integrate that with your identity
and understand that.
And that can come up in all sorts of ways.
And it can be really, really quite difficult to to work with that.
So it's definitely something to be aware of when you tell people or, you know,
when you share your diagnosis, that not that some people might struggle with that.
And just to know that that's a possibility.
Ultimately, there's there's a real need for integration of all of this, you know,
understanding, integrating this news.
It's a really profound thing to find out about yourself, particularly later on in life.
You know, we think we we kind of think we know most of our aspects,
like key aspects of identity of self by the time we're, you know, maybe in our teens,
twenties, that's that's kind of when we decide to discover something so big
about yourself in your forties, fifties, sixties, even, is is a really big thing
to integrate and to work with and to figure out.
So it's really, really important to use it to live in ways that work for you.
And it can be a really helpful way of doing that.
And I think that shift, that insight is like, what's going to support you going
forward in living a better life, more of the life that you want to live
and more easily too, because a lot of us, if we're not diagnosed,
we spend a lot of time just struggling and that this is a really it can be a key
to an easier way of being, which is more in line with how much effort
everyone else is spending just to get by in the day.
So if you are affected by this, if you're in the discovery process or you're
recently, you've recently discovered or been diagnosed with a neurodivergent
condition, these are some of my tips to how you can work with this.
The first one is give yourself space and time.
It doesn't all need to happen immediately.
It can, you can choose to slowly explore this and to whatever level
of energy you have interest you have.
Maybe it's maybe it's just not interesting to you.
Maybe it's not relevant to you and you are not right now.
You've got something else going on and you want to do that.
There's no need to kind of answer all the questions and explore all of it
immediately, just because you've discovered it.
The next part of this is really considering yourself in relation to
the idea of disability.
And this is a strange one.
This is, this is still a challenge for me.
The idea that I have limitations that I, that other people don't have is
something I intellectually understand and can kind of think through.
But I haven't really fully embedded it into my own expectations about myself
and how I behave and how I can perform.
And when it is limiting, I can get very angry at myself for feeling those things.
So that can be a real challenge, you know, like understanding yourself as,
as fundamentally having a limit that you didn't expect to have is,
is a really big thing and a difficult thing to encounter.
One of the things I found most helpful is talking to others who share your
experience and this can actually be a really, really helpful way of understanding
of understanding, even if you're just, if you're watching this and being like,
am I neurodivergent?
Maybe I am.
Maybe I'm not.
I first started to have an inkling that I might be, might have ADHD when I was
at a, at a conference and we had an open space and we were talking
there was a thing on neurodiversity.
And so I'd always been interested in neurodiversity.
It was always a thing.
And I was talking to a bunch of people and they were sharing these life experiences.
I was like, oh, that sounds familiar.
That sounds familiar.
Hmm.
That sounds very familiar.
And it turned out all of them had ADHD.
And so that was suddenly a light bulb moment of like, oh, okay.
This thing that I thought was just me or just normal is maybe not.
Maybe there's another explanation.
So finding others and talking to them about how much your experience lines up is a,
is a really big part of that.
Another way to do this, both pre and post discovery is finding groups that are,
are, are due of people who share our experience.
It can be so incredibly healing just to turn up and be in a space where like,
oh, I don't have to try.
I don't have to mask anymore.
I don't have to not be me.
I can just show up as I am.
And it's really relaxing in a lot of ways.
And I think when we suddenly find that affinity in a group, we're like, oh,
oh, this is, this is, this is me.
It can be incredibly healing and incredibly helpful in, in, in understanding
and developing these things.
And this doesn't necessarily have to be groups where you're like,
where they're specifically about a condition.
Sometimes we can just find spaces where a bunch of people like us like to hang out
around a hobby or a, you know, something that we're doing or maybe
some specific specialism in work.
Just finding that people who have you have affinity for and understanding
what that's about can be a really, really helpful way of developing this.
And also of, of, of self self-acceptance and self-compassion as well.
Certainly I find it much easier to express compassion to other people than to myself.
And so being around people who share my experience is like, oh, yeah,
I understand that.
And then you can kind of turn that in on yourself, which is a really helpful thing.
Another aspect of this, I think, and particularly when you have
un-stereotypical experience of, of a condition is looking at the clinical
descriptions and figuring out what they mean in your terms, because they're
often put the language isn't very helpful.
The language is, is, is very much in terms of judgment and it's an
external perspective and it isn't necessarily how we describe ourselves
or our own experience, but understanding where we do line up with that language,
where that makes sense for us.
And what that actually is, what our experience is in those terms,
even if we wouldn't use that language itself, is both a really helpful
way of talking to clinicians and talking to bureaucracies when we do need help.
And it's also a really good test of like, if you genuinely can't line up
those experiences, maybe, you know, and you're exploring the condition.
It's a little bit like, well, maybe there's a different condition
that fits your experience better.
So, so it's a really helpful way of doing this.
And always consider further exploration.
I think this is, you know, it's a part of us and it's not really separate
from any of the rest of us as, as, you know, as, as like lived experience,
particularly with neurodevelopmental conditions.
There's no that like dyslexia and ADHD and autism.
There's no, like where the condition ends and the rest of me begins, isn't clear.
There's no, there's no line there.
So anything that helps you be more you, be more at ease and works for
you is really helpful.
That might be more diagnosis.
That might also be diagnosis and exploring some of the co-occurrent
conditions that come with the things.
Very many people have very, like a lot of neuro neurodevelopmental
conditions have, have physiological symptoms as well.
Things like hypermobility or digestive issues or migraine.
And so like helping sort those out is all part of that one picture.
Getting a, getting a, like discovering your neurodivergent
can be key to figuring out how to address these, but it doesn't
mean not addressing those as well.
Therapy and coaching can also be really, really helpful and in supporting you.
Though you might find that you have to be more discerning and look
more carefully at different, different providers who understand
the needs of you as a neurodivergent person, because being neurodivergent
might break some of the assumptions that they would otherwise make.
So it can be really important to find someone that does understand that,
even if they're not explicitly working with the condition in what
you're doing together, you know, you're not working with a symptom
of it as such, but just someone who gets it and understands it is
really, really important in terms of making sure that you can find
the right support that you need.
So if you've got any questions or anything, please do chuck them in the comments.
I'd love to hear them.
I'm going to be doing these regularly, hopefully once or twice a week.
And I want to make sure that I can include any questions that come up in
subsequent episodes.
So if you've got anything you'd like me to talk about, anything you'd like to
know, please do get in touch.
I'm going to be talking about a range of things, some
practical stuff, some maybe less neurodiversity related stuff and more
kind of just work and change and system stuff.
So, yeah, that's basically everything.
There's going to be notes and hopefully a transcript
available on the website.
And I will so check that out if that's useful to you.
And I hope to see you again soon.