Misunderstanding and neurodiversity

Being misunderstood a lot of the time is an experience so many neurodivergent people face. In this livestream I'll talk about the kind of misunderstandings that occur, how it can affect us, and what we can do to address it

Content warning: This talk mentions bullying and harassment and mental health difficulties.

References

• Attoe, Darby E., and Emma A. Climie. “Miss. Diagnosis: A Systematic Review of ADHD in Adult Women.” Journal of Attention Disorders 27, no. 7 (May 2023): 645–57. https://doi.org/10.1177/10870547231161533.
• Collins, J., K. Horton, E. Gale-St. Ives, G. Murphy, and M. Barnoux. “A Systematic Review of Autistic People and the Criminal Justice System: An Update of King and Murphy (2014).” Journal of Autism and Developmental Disorders 53, no. 8 (August 1, 2023): 3151–79. https://doi.org/10.1007/s10803-022-05590-3.
• Boisot, Max, John Child, and Gordon Redding. “Working the System: Toward a Theory of Cultural and Institutional Competence.” International Studies of Management & Organization 41 (April 1, 2011): 62–95. https://doi.org/10.2307/23032328.
• Wilmot, Adrienne, Hannah Pizzey, Suze Leitão, Penelope Hasking, and Mark Boyes. “Growing up with Dyslexia: Child and Parent Perspectives on School Struggles, Self‐esteem, and Mental Health: Dyslexia (10769242).” Dyslexia (10769242) 29, no. 1 (February 2023): 40–54. https://doi.org/10.1002/dys.1729.
• Pantazakos, Themistoklis, and Gert-Jan Vanaken. “Addressing the Autism Mental Health Crisis: The Potential of Phenomenology in Neurodiversity-Affirming Clinical Practices.” Frontiers in Psychology 14 (September 4, 2023). https://doi.org/10.3389/fpsyg.2023.1225152.

Transcript

Hello, everyone, and welcome to another one of my live streams today, we're going to be talking
about misunderstandings and the relationship to neurodiversity. We're going to be talking about
the kind of types of misunderstandings that can often occur if we're neurodivergent,
how it can affect us, and how we and others around us, which is a really important part of this,
can address or start to address those misunderstandings. Before we get too into it,
a bit of a content warning where we're likely to talk about or I'm going to be talking about
touching on bullying and harassment, and also some of the mental health consequences of
being pervasively misunderstood. So if any of those things are a problem or a challenge for
you, then please take whatever steps you need to stay safe and happy. Do ask questions as we're
going through this, as we're going through this, please do add comments, and I'll try and bring
any of them in. My own relationship to this whole topic is a really big one,
like a lot of late discovery neurodivergent people. I have spent a lot of my time being
misunderstood and not really having much of a framework for why I've had a lot of really
difficult situations where I have been really profoundly misunderstood, and it really hurt
and really caused me quite a lot of difficulty. So it's definitely a big thing for a lot of us,
and I want to dig into exactly why. So,
first thing is to think about the kind of types of misunderstandings that show up and how they
show up. Why are we so misunderstood as a group of people? And if we're neurodivergent, we're
experiencing the world differently, we are thinking different things, feeling different things,
and maybe we have different strengths and weaknesses as well. One of the big ones for me here is the
idea of ADHD and just the capacity to do something, to achieve something, and how that isn't always
understood. So, you know, the people would often say, you know, if your life depended on it, you'd
do that, or if you've got a million quid for doing something, you'd do it. And I have some pretty
direct evidence from my life that that's not always true. Sometimes we just don't have the
capability of doing it, so we can often get misunderstood. Another big area of misunderstanding
is the stereotypes, which I touched on in the last week's talk as well, and really those
stereotypes can get in the way of people being able to understand exactly what we are talking about
and how we are experiencing the world, and how that might not fit with their, how they're seeing us,
whether or not they see us as neurodivergent, whether or not they see those aspects of our
identity as the important ones right now. One of the big areas of misunderstanding that shows up
is miscommunication. And this is a really, really big one, because not everyone's words,
everyone's models of words, mean the same thing. We might talk about something, and it's really a
shorthand to understanding. It's not a true understanding of the world, and things might
mean different things to different people. And this isn't just a neurodivergent thing, it's
actually very much a cross-cultural thing. Our exact meanings of words, even for really obvious
things, don't necessarily line up. What we have as a kind of perfect example of the thing, a precise
example of the thing, might be different. And just to give you an example of this, I think
it's quite a funny one, to think about cheese, which is, you know, is a really, you know, we all
have a word for cheese, you know, in pretty much every, like all European languages have a word
for cheese. We all, and it directly translates, cheese is cheese, is fromage, is ost, is whatever.
And, but what that actually means culturally is different. Like, cheese to a French person is
different to cheese to a British person, is different to cheese to a Norwegian person,
particularly with that weird, brown, kind of sweet cheese. Anyway, but those differences
are actually really important, because if we just say cheese, we're thinking about different things.
And this effect kind of plays out when we're experiencing the word differently,
when we're categorizing differently. Even if the word means the same thing for the category,
our examples, what falls into it, what falls out of it, might be different at the edges.
So there's a really, really high chance of miscommunication happening. Now,
the, perhaps the bigger problem, or one of the bigger problems here, is, is misimference. And
what I mean by misimference is that going from either what someone says or how they behave
to their internal state and an understanding of their internal state. This is something that
humans do all the time. We're always trying to figure out, like, what's going on with someone.
Why are they behaving like that? How, how does what they're doing, what they're saying, correlate
with their internal state? And we do that because it's really helpful in predicting,
you know, and being able to work out, okay, well, what are they going to like?
What, how can we help them? You know, what are they going to do next? How can we support them?
So it's, it's a really important part of how we function socially.
But when we experience the world differently to someone else, there's a very high chance that
we will infer things wrong. And that's also true in the other direction, that people will
infer things wrong about us. And again, going back to the ADHD example, like one of the big
issues with ADHD and relationships can be the feeling that people don't care. And people with
ADHD, it's often expressed that, you know, it's hard to maintain relationships because we don't
necessarily behave in ways that demonstrate care or even love in the same way as other people.
We might not stay in touch, but we do things differently. And this is also true with autism
and the whole range of other neurodivergent things. How we demonstrate our feelings,
our inner state can be really quite different to how we, to how another person would.
It's not that those feelings aren't there. And it's not that those feelings aren't completely true
and completely valid. But it is the case that we don't necessarily perform them, behave them on
the external way, like in an external way, in the way that other people would. And that can cause
all sorts of really, really difficult misunderstandings, particularly in relationships.
The last big area of misunderstanding I'd like to talk about today is the systemic
misunderstanding. And what I mean by systemic misunderstanding is when the world is essentially
designed for humans who behave differently to us. This can be as much as this shows up in things
like, you know, recruitment processes. Again, there's an inference problem here. It's like,
we think someone who is going to behave like this in an interview is going to be good at the job.
That's basically what we're saying when we're designing a recruitment process.
But that's not true for so many neurodivergent people, so many other people as well, actually,
but so many neurodivergent people, that this idea of like, you behave this way, or this surface
thing shows up. And then that means that you can do this, or you are that, or you should be this,
or not be that, is a huge, huge barrier to how we can interact with the world.
It also means that when we do something, it's not always explicable. And the systemic misunderstandings
are one of the really big problems when neurodivergent people are interacting with the criminal
justice system, is behaving a certain way is, if it's, if it's a explicable way, if it's a broadly
accepted way to behave, it's much easier to, to say, oh yeah, I was just doing this.
Whereas if you behave in different ways, it can be seen as suspicious. It can be seen as
a sign of guilt, for example, or a sign of something, even though it's just your natural
reaction to a situation without that underlying guilt. So those inferences, again, they fail
there, and it can be really, really harmful to us and can lead to a whole load of really significant
challenges. Another area that this shows up is in the kinds of behavior that we do,
that becomes stigmatized, that become other, that can become different.
So for example, the big one here, I think, or the really obvious one here is, is stimming,
what we call stimming. And all stimming is, is self-regulatory physical behavior.
Almost every human engages in self-regulatory physical behavior. Neurotypical people do,
neurodivergent people do, everyone does. It's something that is a core part of what we do.
We do things to make ourselves feel better. We move in certain ways to make ourselves feel better,
or make ourselves feel certain things. It's, and fit the context that we're in.
That's something we do all the time. However, what we mean by stimming is self-regulatory
physical behavior that neurodivergent people do and neurotypical people don't do.
And so it's stigmatized, it's separated out, even though it's part of this broader thing.
It's just not understood as a necessary behavior, as something that you need to do
in circumstances. And this, this shows up in all sorts of ways. For me, I'm a compulsive fidget.
I fidget all the time, and I actually need to be moving to really think about things and understand
things. And this gets misunderstood by a lot of people to think, I'm not engaged, I'm not interested,
you know, and actually it's the opposite. If I'm sat completely still, I can't really be paying
attention to anything. So those misunderstandings about how my behavior relate to what I'm doing
are a real issue. And over time, that can really build up for us and cause a whole
load of really quite significant difficulties. I think the big one that I see an awful lot is
we tend to almost like internalize a lack of trust in our own experience of the world.
It's like we're always told we're kind of experiencing it slightly wrong. We're doing,
you know, we're doing this wrong, whatever it is, just being, just existing. And that can lead to
us kind of feeling wrong, thinking that our experiencing of the world is fundamentally
flawed, isn't right, is problematic in some way. And we kind of don't trust our own feelings
after a while. We learn to trust other peoples and defer to other peoples, which can be okay
some of the time, but it leads to us often people pleasing, not being able to assert our own needs.
And it can even lead to us being vulnerable to being taken advantage of, because we'll just go
along with whatever someone else thinks is good, even if that isn't good for us.
And another big aspect of this that can be a real risk factor, I think, for burnout and for
dissatisfaction in general, is that we learn to separate the things that we intrinsically
enjoy, the things that are rewarding for us just for their own sake, that they're pleasurable. We
do them, they're great. We like doing them. But we learn that they're not okay. We learn that
they're not safe, or that if we do them, we'll be rejected, or we'll be punished, or something bad
will happen. And that there's this whole other group of things that we do for external reward,
that other people reward, that other people like. This separation of the intrinsically
rewarding and the extrinsically rewarding are really, really difficult things to live with
in the long run. Because we're always going to be kind of only doing one, not the other. And
one of the big problems, particularly when you start, when you're working,
is that you're working for extrinsic reward. But if it isn't, on some degree, intrinsically
rewarding as well, it's a huge risk for burnout. It's just a miserable existence.
So ultimately, moving towards being able to have the intrinsic and extrinsic rewarding things,
the same thing is a lot of what we're trying to do. Another big area this shows up is
shame and self blame. We feel ashamed. We take on all of the burden of misunderstandings.
And that can be a helpful thing in some ways, because we could get very good at explaining
ourselves. It can become a hyper-adaption almost, that we're building this strength to be able to
explain ourselves. I'm sure that's a lot of the reason I am so interested in words and language
is because I'm so keen to make myself understood on some level. But this idea of always being the
one at fault is like, if someone doesn't understand me, that's my fault. If I don't understand someone
else, that's my fault too. That doesn't actually bear out logically. But it's the working assumption
that so many of us hold. And it can be a really, really hard assumption to work with. And we often
end up then blaming ourselves for any misunderstandings entirely. And also, it makes it harder to work
with because, yes, some of the fault might lie with us, but the fault that doesn't lie with us,
we can't fix by worrying about ourselves or seeking to change ourselves. It can also lead
to very low self-worth in general. And particularly that idea of just not being fundamentally
worth very much unless you're exerting a ton of effort to be understood, to fit in,
to really work with other people and adapt. And anytime that you don't succeed in that,
that then that becomes a reason to not value yourself, to feel bad about yourself. And I'm
very much speaking from personal experience on this one. I think the other big area that this
shows up is just by giving up in one way or another. This can lead to us not bothering to
communicate, not wanting to communicate. I think it's also a part of what sometimes gets called
pathological demand avoidance, which is this idea of not wanting to do things that other people
have told you. If you have experienced being asked to do things and them not working out,
you've either misunderstood and done something different, and then been shouted at, or you've
not completed the task in the way that was expected and got into trouble. All of these things,
we learn that being asked to do things, isn't safe at all. And so we necessarily push it away.
And that makes perfect sense on that level, but it's a really, really difficult thing,
because we do want to work with other people. We do want to respond to other people's needs,
and we do want them to be able to express them to us clearly. So it can wrap up into a huge
lot of quite tangled problems. And I want to talk about, to wrap up, I want to talk about
how we can start addressing these a little bit, and maybe working with them. The first thing I'd
like to talk about is the problem with the golden rule. Now, the golden rule says, do unto others
as you would wish to be done to, or words to that effect. It's about, as a kind of first pass,
it's actually quite useful. It's a good test. But when other people experience the world differently
to you, it's really difficult. And we, as neurodivergent people, will probably have experienced
lots of times doing something we thought was really good and kind for people based on something
that we would like to have, an experience, and turned out that they really didn't like it,
that they really disliked it, and experienced a lot of confusion and kind of rejection around that.
And we will very often experience the same thing back to us, but perhaps without the same ability
to turn around and say, no, this, this isn't right thing for me. One of the big examples of this
I see show up in workplaces all the time is what's actually rewarding for people, what people like.
If someone's quite quiet, quite introverted, doesn't like being the center of attention,
being called out for having done something really, really good, doesn't feel like reward.
It feels like punishment. And I think that is a really important thing to understand. It's like,
what does someone actually want out of a situation? So we really need to be quite
careful with the golden rule here and not always assume that what other people want is what we
want. And also, perhaps more importantly, as neurodivergent people, we need to watch out when
someone else is doing that to us. And then we can say, sorry, I don't experience that the same way
you do. And actually being clear about, because very often people aren't trying to hurt us or
trying to punish us, they're trying to help, but they're working from this assumption. And so if
we can spot when other people are kind of using the golden rule and it doesn't apply, it's a nice
way to be able to say, look, actually, I don't feel this way. One of the other really, really big
areas of this, and this is a very much an autistic thing, but I think it probably extends to a lot
of neurodivergent people is how important context is. One of the actual clinical markers of autism
is a high degree of the need for a high degree of verbal context, which means that we need things
explained to us very clearly. And it's not, actually, I don't think it's so much that we don't,
it's not that we don't understand or we can't infer a viable context very often. It's just that
I've learned over time that my contacts, how I'm going to understand the assumptions I'm going to
make about the world are going to be different. And so if someone asks me something, I know that
the best thing for me to do is to ask them and get really clear about that, rather than
jumping to my own conclusion, and then getting it wrong, and then getting into trouble, because I
haven't done what people expected, or they haven't, you know, they haven't understood things the same
as they did. And so being really clear about our context is very important. And this is even more
important if you work with neurodivergent people, but you're not neurodivergent yourself. Because
you're not going to be asked to consider your context nearly as much as anyone else. You're
operating in a context that's in common with so many people, with almost every, with most other
people. And when you're operating in that context, actually working with the edges of it, being like,
actually, what are my assumptions here? What am I thinking is a much harder thing for, for you,
perhaps, than it is for people who aren't experiencing the world like you and regularly hit
the edges of this. So being really clear about what our context is, is really, really helpful,
even if it seems obvious and self evident to you, because it almost certainly isn't to someone else.
The next thing is why, and related to this, actually, is why best practice is such a problem.
Is best practice, when we're talking about human interaction, isn't really possible.
Because everyone's different. Everyone's experiencing the word differently. We can often
have good practice for a group or for a situation that's likely to work. But what we can't say
is this is always the best way to approach this. And another really good example of this I've had is,
is I was reading an article, a kind of business psychology article, and they were saying, you
know, if you're a manager, then the best practice to have a difficult conversation with a colleague
of yours in your team is to have a sit down conversation face to face.
Now, I'm sure that's true for many people.
Though for quite a lot of neurodivergent people, and particularly autistic people,
that might be overwhelming. And it may actually be better to have a difficult conversation
over a phone call or over even chat. And chat can be really useful because it can give you a chance
to figure out your words and really make sure that you're understood. So whilst for some people,
having difficult conversations face to face is the best way, that's not true for everyone.
And there are so many examples of this. So if something is considered best practice,
and that is the only reason that it's being done, it's really worth considering whether it really
is appropriate for that situation, because best practice in human interaction doesn't exist.
One thing to also bear in mind is, as a neurodivergent person, is we spend a lot of our lives
justifying ourselves, explaining things, kind of one of the really big things that shows up is we
will, is the preemptive self-justification. So you'll be that urge to just explain everything
all at once ahead of time, even when you're asking for something really small.
That's an example of what I think of as preemptive justification, because we've had those experiences
of being misunderstood. So we give people all of the information so they understand ahead of time.
But it's really important to understand that not everyone does want to really understand us.
Not everyone is operating in good faith. Not everyone has the capacity, actually, to understand us
either. So we do need to be somewhat discerning about what we share, how we share it, and try and
make sure that it reaches the people that we're speaking to. However, spending time with, connecting
with people who really do understand us without having to do all of this effort is a really healthy
thing. And I think we need to, you know, finding those spaces, seeking out those people and those
relationships, where you don't have to be so, like, careful about everything you're saying
is a really, really lovely thing to experience and a really valuable thing to experience,
even though I think it can feel very vulnerable and difficult, first of all, because we can be
very protected around this. Ultimately, what we want to do is start unpicking all of these
misunderstandings and untangling this. And that's not something any individual can do or should try
and do just on themselves. It's got to be a collective thing. You know, we're often making
an awful lot of effort already to be unpicking all these misunderstandings. So not taking on all
of the weight of them is a really good place to start with this. But over time, we can do and we
can also start unpicking some of the internalized stuff. Because if you're like me, you're probably
carrying a lot of those past experiences where you've been misunderstood and you're still kind of
blaming yourself on some level, when maybe that's not actually appropriate. So actually kind of working
through these things and working through all of them can actually result in quite a lot more
ease and clarity and can actually make it easier for us to express ourselves and get our point across.
So I hope that was really useful to you. Please do comment and ask any questions you've got in the
chat. I want to start having kind of little viewer comment sections, viewer question sections at the
end of these. Because so it would be really helpful to me if you've got something to share or anything
it doesn't have to be directly about this at all, that please do share it in the comments.
The notes and the transcript for this show will be available on the website very shortly,
which is the link you can find in the show notes, as are links to all of the references
that you might have seen in my notes as well. So I hope this was useful and I hope to see you again very
soon.