Autism has historically been perceived as a predominantly male condition due to diagnostic biases and a lack of research into female presentations, leading to many autistic women being overlooked and struggling with undiagnosed challenges throughout their lives.
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about 10 years ago there was a big wave of these very powerful personal testimonies of late
diagnosed autistic women who had a really hard life and you just think these people deserve to be
heard and to find out why life has been like this for them that was the kind of Eureka moment for
me i thought there is something different going on in this population which nobody's captured
should we start with the current understanding of autism what what is autism and why do we think
about it predominantly as a as a male thing the term actually refers to self-absorption and it
came way back when it was first identified in children and what characterized these children
by the people who first started describing them was their apparent sort of aloofness
and aloneeness and the idea that they or the presentation that they didn't have the need for
contact with anybody else but that has kind of changed over the 80 years or so in which we've
been trying to understand what this condition actually is in the the latest uh diagnostic
and statistical manual criteria there's a focus on two characteristics of autistic individuals
one is to do with problems with any kind of social interaction and the other is to do with problems
with repetitive movements some what's called stmming self stimulation so hand flapping spinning
um or or you know hair twiddling or something like that um and also very very narrow focused
obsessive interests resistance to change is also something which is very characteristic as any
parents or carers of autistic children can tell you and finally which is only recently been added
uh unusual sensory uh experiences so highly sensitive to bright lights loud noises
uh but also sometimes hypo sensitive so they sometimes don't respond to the sound of their
name for example which is interesting because it looks as though sensory sensitivities or sensory
differences much more common in females autistic females so it hasn't been part of the diagnostic
picture from the beginning which could be part of the problem so our picture of autism still still
evolving very much at the moment it it is it has changed but I think in the public consciousness
there is quite a sort of fixed stereotype of autism which is what you know parents of
autistic children say their heart sinks you know the Rainman effect you know the idea that there's
somebody with very very strange superpowers and also very bewildering patterns of behavior and
also in the stereotype is that characteristically they're male yes and that's something that has
been pervasive in the scientific community as well isn't it absolutely and the clinical community
it's one of those stories of a self-fulfilling prophecy when when the descriptions of what was
called autism first arrived there was no comment that it was characteristically male but gradually
as the cases accumulated and then people started collecting prevalent statistics there it did look
as if it was more common in boys because the cases that were being reported there were more
boys um than girls and the very first sort of epidemiological study which was done in the UK
found that they were looking at a ratio of about 4:1 so they did comment that there were four times
as many boys as girls and that kind of became fixed as a characteristic of the condition there
were sort of passing comments about there being fewer girls um and even in the 1980s when the
um description was broadened considerably and included aspects such as Asperger syndrome there
was observations that there were fewer girls but there was a kind of interestingly Lorna
Wing who's perhaps one of the mothers of autism uh said "Or maybe girls are just better at hiding
hiding their signs of autism." Which was almost a sort of passing comment um and nobody really went
into so why should they be hiding their signs you know why is that more girls doing that so
that was parked for a long time and then so in fact you know clinicians would would say you know
if a a a a parent turned up with a daughter and said "I'm a bit worried about this behavior she
can't be autistic she's a girl." You know and this is this is not an uncommon still comment
and so it became part of the clinical literature and then as you said it also became part of the
scientific world which is where I was because obviously if you're interested in a particular
clinical condition you take the participants from the already diagnosed individuals or even if you
have a slightly more generous approach and say well I'm going to test a whole community
see who's got higher levels of autistic trades some males some females you'll then find that
um probably your funding body will say we have to prove that these people are definitely autistic
so they then are presented with the so-called gold standard tests um the [ __ ] which is the autistic
diagnostic observation schedule where people look at various kinds of behavior they think
are characteristic of autism or try and elicit those um and also uh a diagnostic interview which
is something like 93 questions where the carers or or parents of of of children if you're looking at
children or the adults themselves are questioned about unusual aspects of behavior those are called
the gold standard tests and they're very rigid very very um driven by algorithms so you have
to get so many points and then the algorithm takes you over a clinical threshold or doesn't and it's
turned out that actually those tests themselves because they are based on individuals who already
diagnosed are looking at individuals who are male so even if a girl you know somebody says yes so
maybe she's autistic she gets to a clinician who gives her the tests she fails to reach the the the
threshold so at each point there's this bias which is kind of built into the system which means at
the end of it there are fewer diagnosed autistic females they're almost not autistic enough that's
right to pass the test yes yes only a bit autistic and then what happened when we started to look at
at the brain did we at that point start to look at at girls and find a difference right well I I
guess that's where I came in i thought you know fair enough i'll go through the literature and
I'll I'll I'll see what's been found and that's when I found that actually we hadn't found
anything because nobody was looking the first 30 years or so of research uh one of the surveys I
did showed that uh 70% of the studies only tested males or one or two females and we're drawing out
quite interesting models of um you know what was characteristic of the autistic brain maybe this
could tell us something about the brain bases of autism but it was all based on on on boys
and men um which is pretty shocking because there were autistic there are there always been women
who've been diagnosed with autism but actually of course because they were being tested against a
male standard it was only the girls who presented like males who got diagnosed the ones who had a
different presentation as you say didn't make the cut who wasn't weren't autistic enough so when
we did that on males as you say what what did we find out about the brain well it was interesting
because the discovery of different networks in the brain which underpinned social behavior tied
in with an idea that our brains have actually evolved yes to give us language and creativity
etc but also to make make us social make sure we're social but also to have a drive to be social
so it wasn't just a sort of pattern of behavior was something we needed to do and part of the
so-called social brain is a reward system which you know this was a good thing you know make sure
you do that again and perhaps not a good good idea to go through that again do a U-turn if necessary
kind of thing and one of the areas I'd worked in was like negative social experiences so um
some of us uh social cognitive neurosciences are real killjoys because you put people in a scanner
and make themselves feel bad about themselves or imagine a situation where they created you
know it was real faux parar or to take part in a video game where they're consistently rejected
by the other players etc so then you could see the different patterns of behavior within the
social brain and what was starting to emerge in the early work with autism was that there
was an underactivity less responsivity to negative social experiences um in the autistic participants
than in the neurotypical participants and so we started to evolve this model about um the
hypoactive social brain uh an underactive reward system getting less you know enjoyment um from
social experiences less motivated to be social presumably less of that that negative feedback
so you don't mind so much if you are if you are rejected or don't fit in you know it's a sort of
you shrug if you like um and that was the model that was emerging and it was only when I started
to look at all of the studies that had been done on the social brain which was where it turned out
that as I said 70% had only been done on males and of the rest very small number of females
almost too few to do any comparisons anyway but then there was also a kind of call to arms within
the neuroscience community and saying we really ought to be looking at sex and gender differences
but when they started carrying out those kind of researches even replicating earlier work done on
the social brain with female participants they found a very different pattern of activity female
participants were much more likely to respond much more powerfully to negative social experiences but
also to show evidence of constant sort of self referencing self-monitoring throughout social uh
the kind of social tasks we'd put in the scanner and you can interpret that as saying well they
mind very much there has been this long-standing belief that females are more driven to network
with with other individuals to be social and so there is a suggestion and there was a suggestion
early on that the reason girls were being missed because they were socialized from a very early
age to behave themselves to be nice to be quiet um not to make a fuss and so they were almost being
trained to be camouflagers because if they weren't camouflagers then they were going to behave a lot
more like the boys who are very external the core problem is similar in that there is some
difficulty with the the means of social behavior for all of the the members of of the autistic
population but for the group that spend a lot of time camouflaging and hiding their autism which if
you think about it is a bit paradoxical if you think being autistic is not not worrying about
not being social but the reason they camouflage is because they're so worried um that there is a
different story there so they have the motivation and not the means which is doubly hard i think in
your book you describe somebody who you call Alice it's not her real name and I I thought it was it
was very touching how she only sort of really realized about her own autism when she saw her
neurotypical son start nursery and saw how he just fit in automatically fit in i think that's and
and I use the reason she's called Alice because I have this kind of which I thought was wonderfully
original um metaphor either side of the looking glass i mean appreciating that there is a you an
original version of that because autistic people say they find it hugely difficult this is and
mainly females talking about this hugely difficult to understand how people interact with each other
and that's what drives them to do this exhausting lifelong strategies of watching very carefully the
popular girls at school or people at work and working out how people relate to each training
themselves to make eye contact for exactly the right amount of time and then they write they
actually write scripts they practice them in front of mirrors the whole of their day particularly
little girls at school will be playing out a script that they've got in their head and watching
what the popular girls do and it's exhausting and and that's when they have these kind of
meltdowns when they get home at the end of school and and throughout life and even when parents were
worried about their daughters the teachers would say um "Oh she's just quiet you know she's she
she's she's actually very good she never makes any fuss in class you know she stands quietly in the
corner and doesn't get into trouble in the in the playground." Um and there's a study done recently
where it was shown that if teachers were given a a hypothetical story about a child with behavioral
problems um and asked is do you think this child is autistic or would you refer this child to be
assessed or do you think they need help um if the teachers were told the hypothetical's child name
was Jack they were much more likely to say this child is autistic and needs help than if the child
description exactly the same was called Chloe so even at that point um there's a barrier to
say you know this is is part of this you know clamping pipeline as it were so girls often
develop these techniques to to camouflage or mask their autism does that change as they get older
i think what's really interesting is it definitely changes about the time of adolescence um because
as well as all the physical changes associated with puberty very often in the western world
it also associate is associated with moving into a much more complicated social environment when
you move from primary school to secondary school and that's very often the point at which girls
who had apparently been perfect and no trouble at all suddenly start expressing uh or demonstrating
huge distress um and I think that's because the camouflage is the scaffolding they've um erected
is no longer fit for purpose because they've gone into a completely different environment that's
right they're going away from a nice safe although not that safe but one that they can control arena
to a a really complicated highly socially dynamic with a whole new set of rules very complicated
rules environment going to secondary school and that's really the point at which epidemiologically
we can see a lot of these problems emerging so I think people do need to realize that you know
as we we you know is effortless for us um but it's not effortless for everybody well I mean I
think everybody finds secondary school quite hard because you have because primary school is very
predictable and routine and the rules are very cleared same children in the same class all the
time but I think the issue with I the chapter about adolescent I call the perfect storm if
you're female adolescent and autistic that is the perfect storm and I think being aware of that is
really important um and people should be sensitive to that it sounds like you know getting that label
essentially earlier on is very beneficial yes I think so i mean I I I the use of the term label
is is interesting because there's a a saying in arguing about over diagnosis you know labels are
for jars not for people kind of thing um but I think it's a lot of it's to do with identity and
the the the late diagnosed women are saying the I felt relief because I found my tribe you know
I I found people who were like me and I could you know if you like go online and and there's amazing
resources out there with people late diagnosed women exchanging um their experiences and all of
the difficulties that these women have had because it it they are tremendous difficulties and very
often they present in other ways such as the self harm and the and the eating disorders that
I mentioned um and so at last to have an identity becomes very important um but it's very important
that the autism is identified early because you can then assist the children to develop strategies
to spot the problems um to allow the outside world to make accommodations so they don't suffer um and
to explain to the individuals themselves what this means you know that yes you will be experiencing
the world differently you know and that's because you've got a a different brain and we've all got
different brains and your brain is different in this way from other people's brains so to actually
give it a positive spin as well because these women have been hiding this as a sort of shameful
secret for well for some of them 40 or 50 years until somebody's then said you know I wonder if
you might be autistic and almost invariably well certainly the people I spoke to and and and the
books uh the personal testimonies huge sense of relief at last my life makes sense and they could
realize what it was that had driven their behavior what kind of changes would you like to see i mean
because essentially this is a good news story we've we've discovered that we've missed something
and now we can see it so what needs to happen you hope so i mean there have been clinicians
who've complained that um you know their waiting lists are long enough as it is why we encourage
women to get diagnosis but that's another story perhaps um I think I think the change can be just
the awareness of autism presenting differently that the picture and people complain that the
picture is too inclusive but I think realizing that whatever you think of the autistic spectrum
um it's missing the mark in a large large part of the population well look thank
you very much it's absolutely fascinating book and you know I would urge everybody to read it
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