Whatever happened to the term Asperger's? You don't hear Asperger's or Aspie used very much these
days. So why is that? It used to be really really common. Is it still a thing? Why don't we use it
so much anymore? And make sure you stick around until the end of the video where I'll share my
own personal reasons about where I've landed in terms of the word Asperger's and Aspie in my own life.
Hi everyone, Paul Micallef here from Autism from the Inside. I make weekly videos sharing
the human side of autism so make sure you hit subscribe to get the latest content. When I
discovered my own autism about 10 years ago now, Asperger's was the term most commonly used to
describe people like me. In fact the book, the memoir that I read that led me to my own self
discovery was called Look Me in the Eye My Life with Asperger's. The first online test I did on
myself is called the autism quotient test which is from a study published back in 2001 that has
the official title of the autism spectrum quotient evidence from Asperger's syndrome high-functioning
autism males and females scientists and mathematicians. When the results of my official
internet diagnosis was maybe probably there's a high chance you should probably look into this I
looked for a local support group and found Asperger's Victoria and when I wanted to learn
more about this stuff I went to my local library and borrowed what was essentially the Bible of
this kind of stuff at the time Tony Atwood's the complete guide to Asperger's syndrome and after
all that when I decide this is such a big revelation for me in my life that I want to
start a blog and a YouTube channel I choose the name Asperger's from the inside which you'll see
on basically all of my old videos before I updated to autism from the inside a little while back. So
you get the sense of just how common this term was 10 years ago everyone knew it was a type of
autism and we were always using the word autism as well but it just seemed so convenient and natural
to refer to what we're talking about as Asperger's instead of autism. These days however 10 years
later you'll hardly hear it at all. Yes some people still use it some older groups still have
it in the name but in terms of official settings and in research and in organizations service
providers and things like that even within the autism community we just hardly use that term at
all especially compared to how commonly it was used almost all the time 10 years ago. So what
happened? Well I'm glad you asked you're in the right place in fact I've prepared an entire video
on it which we are currently doing right now so I probably didn't need to tell you that. There are
three major factors that I've identified as to why that term has fallen out of favor and let's go
through them now. Number one the first reason that the term Asperger's has fallen out of favor
is due to an update in the diagnostic process. So for a while the term Asperger's was an official
diagnosis category. In other words many people were diagnosed with Asperger's as opposed to
autism. I won't go into the history but essentially Asperger's was considered to be like a type of
autism alongside other types of autism like high functioning autism or classic autism or other
diagnostic terms that were used at the time to try and be a little bit more specific about what type
of autism we meant by the diagnosis. Then in 2013 the DSM-5 was released and it essentially combined
all the previous types of autism under the umbrella of ASD autism spectrum disorder and then
under that relatively generic term you could add additional information to be more specific. For
example describing the level of support needed in various areas if there's an accompanying language
delay and things like that. So this was a change in the professional medical diagnostic process
but it didn't really stop people using the term Asperger's in everyday life. I mean it's kind of
useful to specify a little bit more about what you mean when you say autism given that the spectrum
is so diverse. So for a while in the community the word just kept getting used and we kind of
just ignored the fact that it wasn't technically a diagnostic label anymore. As Tony Atwood used
to say the term Asperger's will still be around and still be used colloquially because I have
ASD level 1 no language delay doesn't quite have the same ring to it. There was also a level of
identity here. We are in a period of autism acceptance where there's still a lot of stigma
and we're slowly transitioning from an entirely deficit-based model to the kind of autism that
you can actually be proud of. So for a lot of people embracing that aspie identity was a really
positive thing. They're not about to just change their own identity overnight just because a bunch
of psychiatrists in the US decided to modify the terminology of the official diagnostic process.
Over time however less and less people were getting the word Asperger's on their diagnosis
which means as more and more children more and more adults are being diagnosed and or discovering
their own autism the percentage of the autistic community with an emotional attachment to that
older term is getting less and less over time which means that today anyone diagnosed in the
last five years or so probably doesn't use that term anymore and so everyday usage is slowly
becoming less and less prevalent. Okay number two the second reason we don't use the term Asperger's
as much as we used to is controversy within the autistic community. If you're not aware of this
already the issue can probably be understood best as the tension between being united and being
divided. So the word Asperger's the whole concept of having subcategories of autism is inherently
divisive within the community because you're breaking up the community you're separating
out the community into these subcategories. So there's pros and cons to doing that obviously
but the opposite is more like a unifying push to recognize our similarities rather than trying to
separate into subgroups based on our differences. Ultimately where the majority of the community
has landed on that is that it's more important and more beneficial for us to focus on uniting
and what are we share in common then letting ourselves fight with each other basically on
the things that we disagree with. Now initially this urge to be more specific kind of makes sense
and for someone like me for example when I discovered the subcategory of Asperger's it
made a lot of sense to me personally because I wasn't trying to identify with the entire autism
spectrum I was trying to identify with a certain subset of people that were a lot more like me
rather than the entire diversity of the entire community which was much much easier to do. There
was also a significant amount of imposter syndrome for lack of a better word. Do I belong here? Is it
okay that I'm in this space? Is it okay that I'm using this autism label or this Asperger's label
on myself? Does that take away from someone else if I start using someone else's label or can I use
it for myself and do I actually belong here? So it was a lot easier to say yes to those things
when we had a really specific term for that. Now that tendency led a lot of people and still leads
a lot of people to say things like I have Asperger's as opposed to I have autism especially
earlier on in the journey. It may also lead people to say things like I have mild autism or I have
high-functioning autism and there are some significant problems with using that those types
of language and I've actually done an entire video on that. However it makes sense from an
individual's perspective am I really a part of this group? Am I taking away from someone who is
objectively significantly more disabled than I am by using their label for me? So in that sense it's
an attempt to be respectful of someone else's label rather than just taking it on for myself
but at the same time it can be quite divisive within the community because the unconscious
message is I'm not like you I'm like this group of people and I'm not like those group of people
over there. So one way that this played out was the aspie supremacy concept or movement where people
previously shunned from society as being somewhat defective now embrace this term Asperger's and
this identity as an aspie and kind of reframe that as we are the next evolution of the human species
and everyone else is dumb and not developed enough. Hopefully I don't need to dwell too much on why
that is problematic for lots of reasons. It makes sense like a reaction like an overreaction you've
said I'm not as good as you and I'm gonna react to that by saying actually I'm even better than you
but when we take a step back from that and actually look at that a little bit more objectively being
autistic does not make you better than the rest of the population. So sentiments like that have
fueled this desire as a community to come together and say we are all autistic we're all in the same
boat we all share something and we can kind of understand each other and at the same time it
still makes it quite hard to describe well what do I actually mean when I say autism? How do I
appropriately share my skills and my talents and what I'm good at and all my struggles and areas
where I might legitimately be disabled all in the one thing in a way that people can understand and
so actually part of the reason we're moving away from subsets of autism is because when we do those
subsets it's a bit simplistic and they don't adequately describe the depth and the diversity
that exists not only within the community but within one person. So the classic way to understand
this is if you say high functioning autism you're kind of ignoring the struggles of that person and
if you say low functioning autism you're kind of ignoring the capacity of that person. So very often
people are extremely intelligent and gifted and face some pretty extreme challenges as well. I
remember a friend of mine telling me how hard it was to find a good support worker for her son
because he's extremely intelligent he works in academia he's very verbal and he also needs 24-7
supervision especially in public because if you let him go to the toilet by himself he will strike
up a conversation with a stranger in a public toilet and that is just not something that is
often a good idea to do. So his complete obliviousness to even really really basic social things means
that he is quite vulnerable and it's very dangerous for himself to leave him alone a lot of the time
hence needing a support worker to leave the house but at the same time he's also more intelligent
than most of the population. Another related reason around this that we've started to use terms like
Asperger's less and less is that there was a tension around the question of can someone like
me for example talk about autism and help people especially parents understand their children when
their children don't seem to be very much like me they have a different way of presenting their
autism and from the surface of it it looks like we're quite different people so surely we have
different types of autism and this type of thinking tends to dismiss the autistic actually
autistic input from the broader autism discussion and I'm reminded Chris Bonnello talks about this
really well basically saying when I was a child and I couldn't speak and I didn't know what was
going on for me well I couldn't advocate for myself and now that I'm an adult and I've learned
how to speak and I've learned about myself you're not letting me share those insights on behalf of
the children who can't speak for themselves yet so that's a constant ongoing challenge within the
community but the general push is that if you're autistic we kind of have a sixth sense of
understanding other autistic people and so it makes sense to all be on the same team and come
together in terms of advocacy and things like that. So number three the third reason that we
use Asperger's less and less these days is around the controversy is probably not the right word but
just the unpleasant history surrounding Hans Asperger who Asperger's syndrome is named after
very brief autism history lesson around the 1930s and 40s autism was starting to be described by
Leo Kanner in the US and Hans Asperger in Austria so even if you don't have a degree in history you
may not be surprised that some pretty awful things happened under the watch of Hans Asperger. Now over
the years people have painted this picture a little bit differently everything from making
him out to be a saint, describing autism and what we used to call Asperger's in very positive terms,
outlining the skills and talents of the children he was working with, essentially saving their
lives because if they were viewed as disabled they may well have been euthanized. Others say
he was much more complicit than that actively participating in the Nazi regime. I personally
don't think either of those characterizations are either helpful or necessary even without
trying to apportion blame we know lots and lots of really bad things happened it was a particularly
ugly part of history and that's more than enough for the term Asperger's to lose its appeal for a
lot of people. So when you put those three big factors together we've got a change in the
official diagnosis, an emphasis on unity within the autistic community and unpleasant associations
with the man we get the name from, it kind of makes sense that Aspie and Asperger's is used
much much less these days. But where is it still used? Is it appropriate? Is it offensive? Should
we actively stop using it? Should we bring it back? Firstly where are you most likely to still see the
term? It's going to be in either old names which existed prior to the shift that started in 2013,
it's going to be from older people who were diagnosed as having Asperger's prior to 2013,
and it's going to be from people generally towards the start of their autism journey who
need a stepping stone and it's a little bit too hard to go from I thought I was normal to I'm
autistic and it's a lot easier to go from I thought I was normal to wow I found this group
of people who identify as Asperger's and that's a really cool thing and positive thing for me and I
haven't quite made the link between that and the rest of the autistic population yet so it's like
a significant step in the autistic self-discovery process so if you're wondering what terms to use
and when I actually did an entire video on autism language but the short answer is in general there
are newer better more socially appropriate more generally accepted terms to use these days which
means older terms like Aspie and Asperger's with all of their history and potentially some baggage
sometimes are probably not as good to use unless you're really familiar with the history and the
nuance of what you're trying to say and as usual individuals get to decide how they identify as
themselves so if you really like that term for yourself then I would encourage you to do what
works for you because after all it's a self-discovery process not about conforming to what people around
you think you should be doing so what about me personally well I've already shared a bit about
my early journey and adopting Aspie and Asperger's as an identity for myself at the time and since
then I have come along the journey that I've been describing in this video I've connected more and
more to others in the autistic community I've had a better understanding of the diversity within
the autistic community and even people that seem very very different to me I can start to see what
our similarities are and how we can still all be under this one autistic banner and so naturally
I'm inclined to use the term less and less and now I feel like the term autistic fits me better
and now when I go back and try and call myself an Aspie I'm like look it it's alright I guess but
it just doesn't quite fit it doesn't quite feel as good as it used to and so that's why I updated
the channel name a little while back and now autism from the inside feels a lot more on point
to match my own personal journey so I think that's probably the most important thing recognizing
that it is a journey and it is a personal journey I've heard feedback from a lot of people who
really like the term Asperger's they're like why did you get rid of that you know if you didn't
have Asperger's in your name I never would have found your YouTube channel I never would have
found my tribe I never would have gone on this whole discovery process and at all so that kind
of makes sense and that's why I encourage people to follow their own personal journey but ultimately
to answer the question in the very beginning of the video this is my analysis of why I see Asperger's
and Aspie being used less and less in the community these days so I'd love to hear what you think have
you noticed similar things to what I've been describing is it different in your part of the
world please leave a comment if you can I'd love to hear from you if you like this video and you'd
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week so please consider that if you're able it makes a big difference to ensuring I can keep
doing this work otherwise thanks for watching I hope you like this video and I'll see you again
next week bye