#269: The Forgotten History of Autism
Episode Stats
Length
1 hour and 5 minutes
Words per Minute
163.12057
Summary
In the past decade, autism has gotten more attention by the media and the wider culture, and you probably know someone with autism or has a child with autism, and some of you listening probably have a child or friend with autism. Yet, despite the spotlight that it has gotten in recent years, several myths and misconceptions about it pervade the popular culture. Understanding the history of how our conception of autism that we have today developed can go a long way in shedding light on these myths, and my guest today has written what is probably the most extensive history of autism research out there. His name is Steven Silverman, and his book is Neurotribes: The Legacy of Autism and the Future of Neurodiversity.
Transcript
00:00:00.000
brett mckay here and welcome to another edition of the art of manliness podcast well in the past
00:00:18.600
decade autism has gotten more attention by the media and the wider culture and you probably
00:00:22.960
know someone with autism or has a child with autism and some of you listening probably have
00:00:27.480
a child with autism yet despite the spotlight autism has gotten in recent years several myths
00:00:32.160
and misconceptions about it pervade the popular culture but understanding the history of how our
00:00:37.320
conception of autism that we have today developed can go a long way in shedding light on these myths
00:00:42.040
well my guest today has written what is probably the most extensive history of autism research out
00:00:46.360
there his name is steve silverman and his book is neurotribes the legacy of autism and the future of
00:00:51.120
neurodiversity today on the show steve and i discuss the forgotten history of autism research and some
00:00:55.960
of the popular myths that we have about autism out there such as it being caused by cold refrigerator
00:01:00.460
moms certain foods vaccines etc theories as to why autism even exists how parents should approach
00:01:06.660
raising a child on the spectrum and advice on how to connect with your autistic friends and colleagues
00:01:10.720
really fascinating show highlights a lot of things that i didn't know about after the show's over make
00:01:15.180
sure you check out the show notes at aom.is slash neurotribes where you can find links to research
00:01:19.760
where you can delve deeper into this topic steve silverman welcome to the show thank you so much
00:01:30.720
it's great to be here uh so your book is called neurotribes it's a history of of autism research
00:01:37.640
and you talk and we talk later about with this idea of neurodiversity and what you mean by neurotribes
00:01:43.040
but i'm curious why did you feel like this book had to be written a history of the development of
00:01:50.140
the autism spectrum as we know it today i mean why is it important for people to understand that
00:01:54.380
if they really want to understand how we really want to understand autism well here's the thing
00:02:00.760
there were so many sort of bad things happening in the world because people did not know the history
00:02:08.460
and that had been bothering me for years i'm sure we'll talk about how i first wrote about autism
00:02:14.280
back in 2001 for wired but after that article came out i saw that uh families were struggling with
00:02:22.980
uh lack of support and resources for their kids autistic people were struggling with lack of employment
00:02:29.720
and yet almost the uh entire social conversation around autism was whether or not vaccines cause autism
00:02:37.900
and and what that comes from is the fact that no one had ever explained the undeniably steep rise in
00:02:47.100
diagnoses that began in the uh early 1990s and so you know if you read a new york times story about
00:02:54.760
autism and you know the new york times is you know the paper of record and very serious they would
00:02:59.840
always say that the reason for that uh spike in diagnoses was a mystery an enigma a puzzle and you know
00:03:07.660
so that went on for years and years and meanwhile i'm tracking all these news items about autism
00:03:12.920
i thought really why is it still a puzzle why don't we know this and so uh you know that was really
00:03:19.380
what convinced me that i needed to uh start digging back into autism history and sort of see where things
00:03:26.060
went awry in a way and so what kick-started your interest in autism research uh you talked you mentioned
00:03:31.780
that wired article you wrote back in 2001 why did why did you start going down this um this path of
00:03:37.980
researching autism well i've been writing for uh about science uh for wired for a while by then and um
00:03:46.840
i actually came into the autism world in a very unusual way that pretty much the first question
00:03:53.100
almost everybody asked me when they hear that i wrote this book is you know do you have an autistic kid
00:03:58.480
and the answer is no and you know if they're really hip they say like are you on the spectrum
00:04:04.460
yourself and actually i'm not i'm neurotypical but uh what happened was back in 2000 i was on a boat
00:04:12.320
in alaska with more than 100 computer programmers and um the occasion for that uh unusual gathering
00:04:19.920
was something called a geek cruise so it was some guy's idea to uh have like tech conferences
00:04:26.820
in more interesting places than holiday inns in pittsburgh and so we were on this big cruise
00:04:32.740
ship going up the alaskan panhandle and um i noticed that the you know my fellow shipmates on
00:04:39.480
the cruise who were mostly really high level programmers were very industrious you could say
00:04:46.240
like as we were pulling out of vancouver they started uh unpacking routers and stuff from their
00:04:52.400
luggage to upgrade the ship's communication systems and they eventually asked the captain to give them
00:04:58.220
a tour of the engine room and so there were people who like to understand how things work
00:05:02.760
and make them work better and uh sort of the star of the cruise was this guy larry wall
00:05:08.820
who invented a programming language called pearl that is so useful that pearl uh programmers call it
00:05:16.680
the duct tape of the internet and stuff like amazon and and craigslist and even microsoft uh software
00:05:24.120
would not have been possible to build without pearl so as we were coming back into port i asked larry
00:05:30.880
if i could interview him at home uh and he said yeah sure i should tell you we have an autistic daughter
00:05:37.900
and at that point like almost everyone including most clinicians uh i thought that autism was a very
00:05:45.480
very rare condition and in fact uh teachers back then if they you know got an autistic kid in their
00:05:51.340
special ed class would be told uh you know really observe this kid closely because you'll never see
00:05:57.580
another one you know it's so rare and uh so you know when he said that it registered but you know i
00:06:04.300
didn't make much of it until a couple months later i was writing another story for wired about another
00:06:09.940
technologically very adept family in silicon valley the patriarch of the family had
00:06:15.340
built the first computer in the middle east way back in the 1940s and i asked the sister-in-law of
00:06:21.160
the woman i was profiling if i could interview her at home and she said yeah sure by the way we have
00:06:26.160
an autistic daughter and i thought god what a funny coincidence i thought autism was rare and so i was
00:06:32.660
telling that exact story to a friend of mine in my neighborhood cafe here in san francisco and a woman
00:06:39.060
at the next table suddenly interrupted and said oh my god do you realize what's going on and i said
00:06:46.260
what's going on and she said i'm a special education teacher in silicon valley there's a there's an
00:06:52.420
epidemic of autism in silicon valley something terrible is happening to our children so you know
00:06:59.420
i like got the chills it was like a really heavy moment uh but because i was a science writer i thought
00:07:04.860
well you know i'm not only you know we'll get the chills but i can actually look into this
00:07:09.540
and see if it's true so i ended up writing an article uh for wired called the geek syndrome
00:07:15.280
and it was about uh genetics actually and how geneticists had noted that um people who have
00:07:23.640
autistic kids often have autistic traits themselves and are often uh rather gifted in certain fields of
00:07:30.280
science and technology so um you know i pursued that in 2001 with the geek syndrome but it was
00:07:37.340
really the emails that i got for almost well 10 years after that article came out which is very very
00:07:44.560
unusual for a magazine article where i became aware of the really serious problems that autistic
00:07:50.900
people and their families were facing in day-to-day life while meanwhile the whole world was talking
00:07:56.580
about jenny mccarthy and vaccines and dr andrew wakefield and do vaccines cause autism and you
00:08:04.360
know i'd written about big pharma so i knew that the pharma industry is not necessarily our friend and
00:08:09.400
you know they're perfectly capable of doing a huge cover-up of terrible things but as i dug into uh
00:08:16.100
autism history i came to believe that that was not at all the case okay so i think i think this idea
00:08:22.320
the the your geek syndrome that kind of goes back to the neurodiversity thing we'll get back to that
00:08:26.360
later on but let's start let's start with this question um what how do we define the autism spectrum
00:08:32.940
today um and then we can take from there then we can work forward to look back to see how we got to
00:08:39.380
this point sure well uh remember that the autism spectrum is incredibly broad it encompasses people who
00:08:48.220
uh may never learn to speak uh may require almost continuous 24 7 assistance to get through their
00:08:57.140
daily lives so that's one uh part of autism another part of autism is say the cto of a well-known
00:09:05.680
silicon valley company who i've actually met who is you know quite autistic and yet very successful
00:09:13.080
uh in his job his corporate job so it is an incredibly broad range of people in fact an autistic
00:09:21.080
person once said to me that autistic people are more unlike each other than neurotypical or non-autistic
00:09:27.260
people are and in a way that's really true there's a wider range of behavior but there is a certain sort
00:09:33.080
of core constellation of uh challenges that people on the autism spectrum face no matter if they're you know
00:09:41.480
cto's or or people uh you know who can't live without daily assistance and that is um they struggle with
00:09:49.300
reciprocal social interactions they have a hard time reading the body language of uh particularly
00:09:56.220
people who are not autistic uh and they also tend to have very very consuming interests uh you know in
00:10:04.680
psychological terms it's often called obsessions but you know they're sort of very deep and narrow
00:10:10.660
interests so if like somebody's really into trains they'll find out everything about the local train
00:10:18.520
service in fact i have an autistic friend who was uh absolutely thrilled to go to the opening of the
00:10:25.160
new second avenue subway in new york uh the other day you know took uh facebook live videos you know so
00:10:32.880
people with autism tend to get very very deeply interested in the things they're interested in
00:10:38.960
whether it's disney movies or physics uh and they also struggle to do reciprocal social social
00:10:46.260
interactions like they have a hard time making sense of the little signals that non-autistic people
00:10:51.820
constantly send each other with body language and facial expressions and tone of voice uh and many
00:10:58.480
autistic people i mean this is not necessarily part of the official diagnosis but many autistic people also
00:11:04.620
struggle with chronic anxiety um and uh several other things as well but really the core constellation
00:11:11.840
is uh trouble with reciprocal social interactions and very deep and consuming interests okay so let's
00:11:19.940
talk about autism before autism was autism um because it really wasn't until the 1930s that um there was a
00:11:28.540
name put to it or that people started psychologists started recognizing it so before that time i mean how
00:11:33.740
were individuals who showed these traits these constellations of traits you just mentioned
00:11:37.520
how are they labeled or treated well you know they were labeled uh lots of many different things
00:11:45.260
because nobody knew exactly what it was and nobody had sort of described uh autism as a distinct condition
00:11:53.020
um there was a psychologist in moscow uh in the very early 20th century who wrote about a bunch of
00:12:00.940
teenagers who we would now say have asperger syndrome they uh were uh quite intelligent uh but they
00:12:08.920
had they had trouble in social interactions um they were often doing badly in school because they
00:12:15.540
needed kinds of support that hadn't been invented yet um and this woman speculated that they might have
00:12:21.620
some kind of schizophrenia um but she noticed that unlike uh people with schizophrenia if you gave them
00:12:29.720
certain forms of support they would do really really well whereas sometimes um particularly before the
00:12:36.240
invention of medication uh people with schizophrenia you know would not do so well um so there was
00:12:43.940
speculation in the early uh 20th century that you know maybe there was this kind of schizophrenia and
00:12:49.600
you know one of the labels that were slapped on particularly autistic people of color uh quite often and
00:12:57.040
probably it still is applied to them is uh you know what used to be called mental retardation and is
00:13:03.680
now called intellectual disability um there was sort of a class dynamic going on between who got an
00:13:10.680
autism diagnosis and who got a diagnosis of intellectual disability which was considered a sort of poor
00:13:16.980
people diagnosis but there were many many different labels that autistic people were hidden behind
00:13:23.220
before uh not only the formulation of the autism diagnosis but the popularization of the diagnosis
00:13:30.680
which didn't really happen until the 80s and 90s as we'll talk about later yeah and i thought it was
00:13:36.620
interesting too you know people talk about there's been this uptick of autism but you know i know
00:13:41.320
people like don't like doing the historical um psychological analysis on people but you mentioned a few
00:13:47.120
examples from history where people look at the the the diaries and sort of the interactions people had
00:13:53.640
or the record of these individuals and they can be like yeah that person probably had asperger's maybe
00:13:57.900
right i try to be a little bit careful about that because um pop culture has gone a little bit wild
00:14:06.000
with that you know so it's like you know jerry seinfeld goes to see curious instances of the dog in the
00:14:12.760
nighttime on broadway and he comes out saying like hmm i think i'm on the spectrum well you know if
00:14:18.840
the problem with that is i mean he may have autistic traits uh autistic traits turn out to be extremely
00:14:25.480
common you know but the thing is i mean let's face it jerry seinfeld is a multi-millionaire and he's
00:14:30.720
been incredibly successful and you know jerry seinfeld and mark zuckerberg for that matter should not uh
00:14:37.500
you know define what autism is because most people who are on the spectrum have significant uh more
00:14:44.980
serious challenges in their daily lives than that but the whole key to why where you draw the line
00:14:52.800
on the spectrum between autism and non-autism is so tricky is because the spectrum shades
00:14:59.720
imperceptibly into eccentric normality as the woman who came up with the uh word you know the
00:15:07.380
phrase autism spectrum lorna wing uh told me so in other words there's no bright line between autism
00:15:13.980
and non-autism there are people who should not get a diagnosis of autism who have autistic traits
00:15:20.520
and really the bottom line is is the person struggling in their daily life and if they are
00:15:26.500
um which can take you know subtle forms uh they should probably get a diagnosis but you know i'm not
00:15:34.440
into like slapping you know i mean i've met bill gates um he did have a lot of autistic traits when
00:15:40.880
he was younger he's obviously doing very well people say that steve jobs had autism i met steve jobs i would
00:15:48.080
say he did not have autism uh he was a you know an unusual and and sometimes disagreeable man i would say
00:15:55.300
uh also absolutely brilliant i'm looking at an apple magazine right now but you know i don't think he had
00:16:02.440
autism so i think it's possible for people to go a little bit too far in saying that oh everybody's
00:16:08.720
kind of on the spectrum well if everybody's on the spectrum then nobody needs help right you know and
00:16:13.620
that's wrong so um so there we have this spectrum um idea of autism now but it all wasn't always that
00:16:22.760
way um in the early 1940s this is where the history really picks up um two austrian researches austria was
00:16:30.060
like the the motherland of psychology and psychiatry they were working independently from each other
00:16:35.820
they both published papers um describing autism one was hans asperger and the other was leo canner
00:16:43.720
um or i think is that how you pronounce his last name canner it's connor actually okay um in fact
00:16:49.480
what's kind of amusing is that even though he was jewish and from eastern europe for a while when
00:16:54.240
he worked in the psychiatric hospital the patients would call him father o'connor
00:16:58.640
so let's talk about uh connor first because in his conception of autism because that really set the
00:17:06.340
tone for autism research in the 20th century yeah it sure did so what was connor's background and how
00:17:11.500
did that background influence his description of autism so here's the deal leo connor uh you know
00:17:19.460
sort of went down in history uh at least until my book was published as the as the discoverer of
00:17:26.360
autism like you know that's what it said in wikipedia that's what it said in thousands of
00:17:31.180
textbooks uh and that's because in 1943 leo connor published a paper where he described 11 uh of his
00:17:39.840
young patients who uh had you know trouble with reciprocal social interactions didn't even seem to
00:17:46.320
want to know their own parents would uh you know could play on the floor with a pot lid for hours
00:17:53.040
uh didn't seem to want to be interrupted didn't even even seem to care about their parents leo connor's
00:18:00.200
descriptions of autism were very very vivid and one of the reasons why they were so vivid
00:18:05.680
was because when he was a young man growing up in eastern europe he was a poet and so he was
00:18:11.760
he was an excellent writer um and he eventually uh came to the u.s um and he you know worked in
00:18:21.240
psychiatric hospitals and ended up uh getting a job at johns hopkins um and so there uh he published his
00:18:29.500
paper on autism here's the problem though uh even though he sort of took credit for discovering autism
00:18:37.900
what i found out was that he had a connection to a guy who had been virtually forgotten uh except for
00:18:45.940
his last name hans asperger hans asperger uh was working in vienna in the 1930s in a clinic that was
00:18:54.940
a very unusually progressive place for instance um they the patients would do art together they would put
00:19:03.840
on plays together the the clinic was not what we normally think of as like a place where a kid gets
00:19:10.820
dropped off for a couple of hours for a round of diagnostic tests it was a place where the kids
00:19:15.760
would live and these kids were sort of at the end of their rope in a way like they were often put there
00:19:22.080
after being expelled from many schools their parents considered them very very difficult some of them
00:19:28.360
would end up there uh sort of at the behest of the juvenile courts so the kids would stay there for
00:19:35.560
a month or more and while they were there they not only were observed continuously while they you know
00:19:42.840
took tests while they slept while they played with each other or not um but they also had like phys ed
00:19:49.520
classes set to music in the morning uh asperger would read poetry to the kids so it was a very humane
00:19:56.760
environment and the idea was that um the kids would sort of relearn how to become functioning uh members
00:20:06.120
of society uh by creating sort of a model humane compassionate society in the clinic and um what
00:20:14.600
asperger knew was that kids with even pretty profound autism could succeed in life if they were given the
00:20:23.560
right kinds of support and i'll give you an example one of asperger's patients was a young kid who when
00:20:30.040
he was like about two years old started to draw triangles and circles in the sand and eventually
00:20:36.680
became obsessed with astronomy and instead of his mother treating that as just this kind of annoying
00:20:42.920
obsession she supported his interest in uh sorry in geometry actually she supported his interest in
00:20:50.280
geometry so um he then went on to middle school where his teachers thought that he was too intellectually
00:20:56.920
disabled to get advanced tutoring in math he badgered them into it they did it and he eventually went on
00:21:04.440
to become an assistant professor of astronomy at a university by detecting an error in one of isaac
00:21:11.400
newton's proofs in his first year at university so he was a very gifted guy but he was also very
00:21:19.080
autistic like if people would uh if people he knew would walk past him on the street he wouldn't
00:21:25.160
recognize them because uh often autistic people have trouble recognizing faces something called
00:21:31.320
prosopagnosia so uh asperger knew that autistic people were capable of great success but only if they
00:21:39.560
got tons of support from parents from teachers from the local community um asperger also believed that
00:21:47.160
autism was very common that it was a very old thing that uh autistic traits were widespread he said
00:21:55.240
once you learn to recognize the distinctive traits of autism you see them everywhere so what happened to
00:22:01.960
this guy why did his very uh broad model of autism which indeed you know anticipates what we now call
00:22:11.320
the autism spectrum why did that become lost knowledge for most of the 20th century well it's because
00:22:19.160
in 1938 the nazis marched in from uh germany over the mountains to annex austria for the fatherland
00:22:27.720
and they immediately passed uh eugenics laws to purge forms of hereditary disability from uh the human
00:22:37.320
gene pool in accordance with nazi eugenics uh theory and so the kids in asperger's clinic became a target
00:22:47.320
of a secret extermination program that the nazis were running that became the practice run for the
00:22:53.800
holocaust so the nazis actually developed methods of mass killing and disposal of bodies by practicing on
00:23:03.320
disabled children so this was a horrible thing and at the same time of course they were targeting the jews
00:23:11.160
and what happened was two of asperger's closest colleagues were george frankl and ani vice uh they were both
00:23:21.240
wonderfully uh progressive uh people working in asperger's clinic they had to leave the country or die
00:23:27.560
in the holocaust and um what happened was this guy leo connor being eastern european himself now
00:23:36.520
safely installed at johns hopkins uh connor and his wife decided to rescue jewish clinicians
00:23:44.680
from the holocaust and two of the people that he rescued were george frankl and ani vice
00:23:50.520
um asperger's work sort of wound down uh at the height of world war ii he was actually um sent away
00:23:58.920
from the clinic to become an ambulance driver in croatia uh the clinic was bombed by us because the
00:24:06.360
university of vienna had been turned into a nazi propaganda machine instead of the great uh you know
00:24:13.800
highly jewish university that it had been in the early 30s um and so connor saved the lives of
00:24:23.800
frankl and vice and they were both uh in his social circle and frankl was working with him directly
00:24:30.760
when connor quote-unquote discovered autism so you know by the time that connor was working for uh by
00:24:39.160
the time that frankl was working for connor he'd already seen dozens uh of autistic uh people um at
00:24:46.840
all levels of ability from uh people who could not survive outside of institutions to uh you know
00:24:53.480
that kid who became an astronomy professor so frankl knew very well that uh what autism looked like and
00:25:00.760
in 1938 connor's first autistic patient a guy named donald triplett showed up at johns hopkins
00:25:08.520
connor didn't know what to make of him in his notes he wrote schizophrenia which is exactly what
00:25:14.440
you know a clinician would have thought who didn't know about autism um and uh but it was connor's uh
00:25:22.760
the problem was that connor developed a model of autism uh after frankl and vice left because uh
00:25:31.000
connor was unfortunately unable to get a job for uh frankl and vice at johns hopkins so they sort of
00:25:37.880
disappear over the horizon and then connor wrote this famous paper in 1943 that described autism but
00:25:45.800
connor in a you know in a truly unfortunate turn of events um proposed that autism was very very rare
00:25:54.440
and when i was researching his past i noticed that he had done that in his very first paper as well
00:26:02.200
which was about uh syphilis among native americans and he insisted that syphilis was very very rare
00:26:09.800
among native americans well it turns out not so it turns out that native americans did not get very
00:26:15.480
good health care and they distrusted white doctors so in fact connor sort of hyped his discovery of this
00:26:23.960
uh native american with syphilis and in this using exactly the same language that he would later hype
00:26:31.400
autism as this exceptionally rare condition so yeah so connor uh he just said it was also it was very
00:26:39.000
rare where asperger says it was actually very common and the other difference too i noted too in in your
00:26:43.560
book was that connor had a very like very narrow narrow defined traits that someone had to show in order
00:26:49.720
to him to be able to say you're autistic whereas asperger had the more broader range spectrum yes
00:26:55.880
that's exactly true and you know there are it's not like leo connor you know was a terribly evil man
00:27:02.120
or anything he was probably a very good man but um this was the this was the distinction between the
00:27:09.560
mission of asperger and connor that proved to be so uh faithful um connor was trying to establish child
00:27:18.680
psychiatry as a viable field in america he was one of the first child psychiatrists in america
00:27:25.640
so for him to discover a condition that was as he called it a form of psychosis which it isn't but
00:27:34.200
uh you know for him to discover a form of psychosis that was endemic to childhood that would be sort of a
00:27:41.320
big scoop for child psychiatry in america so he tried to draw the diagnosis very
00:27:48.280
uh you know sort of selectively and specifically and he ended up in fact focusing on um sort of
00:27:56.600
super ambitious academic families uh well you know who was in connor's social network super
00:28:03.800
ambitious academic families like several of the uh parents in uh connor's first paper were you know
00:28:12.360
psychologists or psychiatrists themselves so you know it turns out that what was rare was having
00:28:18.840
access to leo connor's office at johns hopkins and he once said in the 50s i believe they had only seen
00:28:27.320
150 true cases of autism in his lifetime and that was because as he bragged to another clinician
00:28:34.520
he turned nine out of ten kids referred to him worldwide for a diagnosis of autism
00:28:42.840
by other clinicians away without giving them an autism diagnosis so he would rule out kids who had
00:28:49.160
seizures now we know that seizures are very common in autism he had this uh mistaken belief that autistic
00:28:55.800
kids are exceptionally beautiful well some of them are but some of them look more like me um you know
00:29:02.600
uh he would not give an autism diagnosis to a kid who had profound intellectual disability
00:29:09.320
now we know that intellectual disability and autism can overlap a lot he he tended to only write about
00:29:15.160
white people now we know that uh in fact you know people of color also get autism at equal rates
00:29:21.800
so connor had a way of like ruling out so many people that it was like a self-fulfilling prophecy
00:29:28.440
that autism was rare and the problem was that for whatever reason he had connor pretty much buried
00:29:37.400
autism uh research by asperger in history he never mentioned asperger's name uh until i did find the
00:29:46.200
one place where he mentioned it was in the 1970s so uh you know pretty much decades of damage had been
00:29:53.000
done and what he said was oh yes asperger what that person discovered was at best a 42nd cousin of my
00:30:00.840
syndrome and has already received serious intention serious attention from investigators that's wrong
00:30:07.480
in fact uh asperger's paper had not even been uh translated into english by that point so asperger was
00:30:16.120
virtually unknown now i asked myself and certainly the first thing i would ask leo connor if he were
00:30:22.520
to appear to me in a dream or something i would say why did you not mention asperger's work you know
00:30:28.840
it was like the one other paper that was published virtually at the same time as yours um you know
00:30:34.680
people say like well it was published in german that was connor's native language if people say well
00:30:40.120
it was published in this obscure german medical journal one that leo connor cited all the time in
00:30:45.720
his papers you know so the notion that like connor somehow overlooked asperger's paper is ridiculous
00:30:53.160
what i think happened probably is that let's not forget that at least you know certainly after 1938
00:31:00.680
and even before that asperger was working for nazis the nazis took over the university of vienna
00:31:07.560
so i suspect that uh connor probably associated asperger with nazis even though he refused to join the
00:31:14.680
party was a member of a christian youth group that opposed the nazis and was eventually banned but i
00:31:20.680
think you know connor basically said forget that guy you know he was working for nazis i'm going to
00:31:27.000
be the sole discoverer of autism but the problem was his model was so narrow that uh people didn't even
00:31:33.800
research autism because they thought it was not a promising career uh because it was so rare such a rare
00:31:40.040
syndrome and you know connor already has it covered in fact people called it connor's syndrome um so we
00:31:47.080
see the problem that happened between connor's burial of asperger and frankel and everybody else
00:31:55.560
who was associated with asperger in history the burial of you know really what was a an early
00:32:01.560
recognition of the autism spectrum as meanwhile connor goes for decades insisting that it's rare
00:32:07.800
rare well so how did that idea of autism being rare um how did that influence how we as a society
00:32:15.640
think about and approach us autism today well uh it it still has a huge effect in fact if you think
00:32:23.560
about what i already mentioned is the first question that almost everybody asked me about my book
00:32:28.920
what you know why did you write it do you have a kid on the spectrum it's like i'm a science writer you
00:32:33.480
know it's like what you know it's as if they're saying no one would write about autism unless they
00:32:39.800
were forced to by circumstances in a sense uh and i think that's an unconscious echo of the belief that
00:32:47.720
autism is rare if autism is common as it indeed is and we now recognize that um then why wouldn't a
00:32:55.880
science writer write about autism but you know so i think it tends to segregate people who are interested
00:33:04.120
in autism into this sort of ghetto you know where only people who are personally affected by autism
00:33:10.200
would be interested in it that's not true everybody should be interested in it it's a very common
00:33:15.240
condition um we have tended to under invest in research designed to improve the lives and uh
00:33:25.480
happiness and security of autistic people in their families instead uh mainly because of the
00:33:32.760
terrible and mistaken idea that vaccines cause autism we've invested millions and millions of dollars
00:33:39.320
in searching for the cause of autism um you know is that interesting science yes uh but we're doing
00:33:48.360
that at the same time that we're basically leaving uh autistic people in their families to twist in the
00:33:54.120
wind without things like programs to help autistic high school students transition into the workplace
00:34:03.320
they're basically non-existent people ask me you know where can i find a program for my kid he's
00:34:09.560
very bright he's very motivated but you know i don't know where he could learn the skills that would
00:34:15.880
enable him to get a good job and thus as a result many many autistic people who would love to be
00:34:22.440
working and who are very capable of brilliant work are unemployed and living on you know disability and
00:34:29.320
and and really poor i mean like you know they're they struggle to buy groceries every day and this is a
00:34:36.120
terrible uh situation and it's specifically because autism was mistakenly believed to be so rare for decades
00:34:44.920
connor also he put out ideas for like what caused autism and like you know put out and researchers
00:34:51.320
that followed in connor's path kind of tried to come up with cures for for autism i remember you
00:34:56.360
mentioned that the frigid mother uh cause of autism yeah that was connor's idea yeah i think it's funny
00:35:01.880
because i collect i collect vintage magazines and that's that's that was a common article in the 1950s
00:35:07.160
was a refrigerator mom yeah absolutely and in fact connor and his disciple leon eisenberg did not only
00:35:14.760
single out mothers it's somewhat of a kind of a sexist dynamic that made it about only mothers uh
00:35:20.440
eisenberg in particular was equally down on the fathers of autistic kids but uh yeah it was you know
00:35:27.000
basically it was a really interesting situation when connor initially came out with his paper he
00:35:34.120
speculated that it was pro that autism was probably inborn thus genetic but if you think about it
00:35:41.240
that would tend to limit um the role of the child psychiatrist because what can a child psychiatrist do
00:35:49.240
about a condition that's genetic well virtually nothing but if but if it's you know psychological
00:35:56.040
instead of genetic or genetic and psychological then the child psychiatrist can sweep in and say actually
00:36:03.960
we know what to do with your child and what was often done with um autistic children for decades
00:36:11.320
for most of the 20th century was that they were put in institutions because of this mistaken idea
00:36:18.200
initially developed by connor and then sort of popularized turned into an almost a pop culture craze
00:36:25.640
by this guy named bruno bevelheim who wrote a bestseller called uh the empty fortress that said that
00:36:31.960
refrigerator mothers in fact he compared the mothers of autistic kids to concentration camp
00:36:38.200
commandants and because he was a concentration camp survivor himself nobody challenged him like
00:36:44.920
who would say that you know he a holocaust survivor was lying but he was lying his entire career was
00:36:51.800
was a hoax more or less he invented degrees that he didn't have um he got tons of money from the
00:36:57.960
rockefeller foundation for allegedly curing autistic kids uh he didn't um so you know betelheim was
00:37:07.240
totally bogus but he blew connor's uh notion of the refrigerator mother up into this enormous uh thing
00:37:16.440
and what was terrible about that was that you know there are significant challenges associated with raising
00:37:23.160
an autistic kid you know it's hard enough what if you are also being blamed not just by your you know
00:37:31.000
therapist uh and your pediatrician uh but by your neighbors for making your kid autistic and that's
00:37:38.520
what happened to the parents of autistic kids uh for for decades you know really through the uh through
00:37:45.720
the 60s actually and in fact i spoke with uh the parent of uh one of the first kids to get the
00:37:53.480
diagnosis uh this woman gloria rimland uh whose husband bernard ended up helping to launch the
00:38:00.200
autism parents movement uh and to demolish the notion of refrigerator mothers but she told me that she and
00:38:06.440
bernard um uh you know had basically been trapped at home for years trying to raise their son who was
00:38:13.000
very self-injurious they couldn't find a babysitter um so you know one night they go out for dinner with
00:38:19.480
another couple for the first time in years and you know they're having a glass of wine they're having
00:38:24.600
a good time and suddenly the wife of the other couple turns to gloria and says you know you just don't
00:38:30.680
seem like that kind of person and gloria says what kind of person and the woman says who would do that
00:38:36.680
to your child so you can imagine the you know the burden of grief and guilt and shame uh that was uh
00:38:46.600
piled on to the parents of autistic kids and it also kept them from talking to each other because to
00:38:53.880
admit that you had an autistic kid was tantamount to admitting that you were mentally ill you know that
00:38:59.320
you didn't love your child that you didn't show your child affection so much so that they withdrew you
00:39:06.280
you know intentionally into you know what used to be called the autistic shell you know and so um
00:39:14.120
it was a terrible thing to do to parents it interfered with science it was a terrible thing
00:39:19.240
to do to autistic people because in the institutions they weren't you know these they weren't going to
00:39:24.920
luxurious autism wards they were going to psych wards you know lockdown wards with adult psychotics
00:39:33.560
where they were subjected to every wacky treatment from lobotomy to uh there was a woman at um bellevue
00:39:42.440
she was the head of psychiatry at bellevue and so she had no oversight you know it's not like she even
00:39:47.560
had to submit her experiments to an ethics board it didn't happen um she gave a bunch of uh autistic kids
00:39:54.840
lsd every day for up to nine months in some cases until she discovered that it was making them more
00:40:03.320
anxious well you know if i took lsd every day for nine months i'd be out you know out of my mind
00:40:09.800
basically so uh anyway uh it was really a blot on the history of uh psychiatry and psychology
00:40:20.680
psychology that uh autistic people were not only so misunderstood that their families were
00:40:26.520
misunderstood and demonized and that autistic people were subjected to these horrible experimental
00:40:33.080
treatments and i also think the idea that you can cure it right i'm sure like these parents would
00:40:37.400
just like they'd spend tons of money do anything go to enormous lengths to like i want to cure my
00:40:42.280
child of this and it was probably just frustrating they think i'm the blame for this so i got to do
00:40:47.240
whatever i can to fix it and i'm sure it was just like kicking against the pricks and i just made
00:40:51.640
them that just devastated them even more right well you know the cure thing really uh you know in a
00:40:59.640
sense took off i would say more in the 1990s and that was when um unfortunately bernard rimland actually
00:41:09.720
got got very into the idea that uh autistic kids could be cured with dietary interventions or
00:41:16.920
experimental drugs like secretin and so bernard rimland was so turned off to mainstream uh medicine
00:41:25.720
really by the refrigerator mother stuff that he sort of became rogue and you know went off on his own
00:41:32.840
to do his own autism research and uh you know i think he had very very good intentions like a kind of
00:41:40.120
kind of a theme running through my book is people with good intentions who try to do good things and
00:41:45.320
then you know end up making bad decisions that then cast a shadow over autistic people and their
00:41:50.920
families and so rimland popularized the notion that kids could be quote unquote recovered from autism
00:41:57.800
through dietary interventions it is true that you know if if an autistic kid is having some kind of
00:42:04.040
digestive upset that if you change their diet you know maybe they're gluten sensitive or have celiac disease
00:42:11.160
if you remove gluten from the diet of a kid who has celiac disease yes they will you know very
00:42:16.360
definitely uh improve their uh digestive symptoms and then their behavior will improve but the problem
00:42:24.280
is that this was all confused with curing autism which it isn't uh some kids do lose their diagnoses
00:42:32.040
over time in that sense they grow out of the diagnosis but there was actually just a major article the
00:42:39.080
other day that many of those kids who lose the autism diagnosis are then diagnosed with adhd or chronic
00:42:46.600
anxiety or chronic depression so what's clear is that people who are autistic are born with different
00:42:55.240
wiring and you know if they meet the diagnostic criteria for autism when they're young they'll get
00:43:00.520
diagnosed with autism they may lose that diagnosis eventually but they still need help and support their
00:43:06.600
whole lives so asperger was ignored for most of the 20th century um yeah connor's idea of autism was
00:43:14.280
sort of ascendant how did that transition go from autism being rare and having these very specific
00:43:20.600
traits you had to meet in order to be um diagnosed as being autistic how did they go from there to the
00:43:27.000
spectrum that we know today well uh the uh you know sort of the avatar of this change was a wonderful
00:43:34.520
cognitive psychiatrist in london named lorna wing and unfortunately lorna is no longer with us
00:43:40.600
i had the uh really great honor of doing one of the last uh in-depth interviews with her at her office
00:43:47.320
uh before she died um but what happened was lorna herself was the mother of a profoundly disabled
00:43:56.200
autistic girl named suzy and so lorna didn't have any problems with uh suzy uh meeting the criteria for
00:44:05.320
you know what was then called connor syndrome she was a classic connor kid in a way um but at some
00:44:12.520
point she was asked by a public health official because you know britain has nationalized health care
00:44:19.160
which tends to get called socialist here in america um but uh so this public health official
00:44:26.680
asked her to estimate how many autistic kids were in a london suburb called camberwell so that they
00:44:34.360
could allocate the appropriate amount of resources for them and so instead of waiting for autistic kids
00:44:40.600
to come to her office like leo connor uh had done she and a colleague named judith gould went out into
00:44:48.120
the streets of camberwell and looked everywhere they looked in uh school records they looked in
00:44:54.440
hospital records they looked in uh clinic records trying to find uh kids with autism everywhere they
00:45:01.320
could and what they found was that there were many many more autistic kids than leo connor's model
00:45:10.040
would have predicted but not all of them would have met connor's very strict and narrow criteria
00:45:17.320
for instance connor wrote about kids who didn't even seem to want to know their own parents
00:45:23.080
whereas lorna and judith would see like a kid who clearly loved their mom helped her do the dishes
00:45:29.640
and then would retire into their rooms to listen to their favorite record 25 times over so it was as
00:45:37.000
if these kids had bits and pieces of connor syndrome but perhaps not to uh not enough to meet the full
00:45:45.320
criteria but boy were there ever a lot of them you know like more than connor's model would have
00:45:50.520
predicted so lorna did not know what to make of this data like she originally thought maybe connor is
00:45:58.360
like completely wrong you know his conception of autism is wrong but then she came across a reference
00:46:04.600
to this paper by this guy who no one had heard of named hans asperger and it was you know in german
00:46:12.600
luckily her husband john who was a schizophrenia researcher spoke german so he translated it for
00:46:19.000
her and when she read asperger's paper and you know this was now you know oh more than 30 years
00:46:25.720
after it was written and forgotten um she said this is it this is exactly what we're seeing in camberwell
00:46:33.160
you know so then lorna sort of went behind the scenes with the editors of the so-called bibles of
00:46:40.040
psychiatry the diagnostic and statistical manual of mental disorders and the international classification
00:46:45.960
of diseases and said you know like hey the criteria for autism are too narrow and restrictive
00:46:53.640
um it it's a spectrum it's not just this monolithic syndrome where all the people are basically the
00:47:00.120
same in fact you know people thought to them are really different from one another and so her
00:47:05.960
changes to the dsm and the international classification of diseases went uh went to
00:47:12.200
print you know in the late 80s and early 1990s and almost immediately the number of diagnoses started
00:47:19.960
to soar just as lorna not only intended but indeed hoped would happen because she knew how hard it was
00:47:29.720
to uh either be autistic and you know have the wrong diagnosis or to raise an autistic kid without help
00:47:37.640
without special education so it was exactly what she wanted to happen but then this you know bogus
00:47:43.640
guy named andrew wayfield came along and blamed the rise in diagnoses on vaccines yeah that's where
00:47:50.040
that came from they found out they later proved that his studies were bogus somehow right oh yeah
00:47:55.240
absolutely no they've they haven't been replicated and you know the the problem is all right here's
00:48:00.680
the thing when i started researching neurotribes i thought well maybe andrew wakefield is a true
00:48:07.320
believer you know he was on to something he ran a study the study was no good there were a lot of
00:48:12.920
ethical problems with it like you know he in his press conferences he would really sound the alarm about
00:48:19.480
vaccines vaccine uptake rates started falling over the world all over the world uh diseases like
00:48:26.680
measles and mumps started coming back strong after being uh kept down for years by by vaccination
00:48:32.920
programs um i thought you know maybe he thought he was on to something and you know he had good
00:48:37.720
intentions no um the more research i did the more i realized that he was just a liar who lies about
00:48:45.880
autism history he insists that autism never existed before leo connor wrote about it well one of the
00:48:52.760
people who would have disagreed with him was leo connor uh leo connor didn't think he was discovering
00:48:57.880
something new under the sun he just thought it had never been adequately described um in the clinical
00:49:04.120
literature and in fact one of the very first uh one of the founding fathers of british psychiatry
00:49:11.400
this guy jay langdon down who named down syndrome wrote about kids who would lose speech uh suddenly
00:49:19.000
you know and dramatically and disturbingly in their early childhood so andrew wakefield said you know
00:49:25.560
losing speech is caused by vaccines you know that's a new form of autism that has never been seen before
00:49:32.520
called regressive autism and of course parents uh you know would believe such a thing because uh it's
00:49:40.520
actually not that uncommon for a kid to seem to be developing normally for a couple of years and
00:49:45.720
then suddenly they seem to lose skills well jay langdon down had had uh noticed that you know more than
00:49:52.920
a hundred years before but andrew wakefield insisted that regressive autism didn't exist before the
00:49:59.080
mmr it's you know he's he's a liar uh but unfortunately a lot of parents still believe him because he told a
00:50:06.360
very simple very emotionally resonant story about what caused the dramatic increase in autism and no
00:50:14.520
one else had ever provided parents with uh you know a true version of history and so that's why i wrote
00:50:21.560
my book to try to uh show what actually happened so this brings us to this idea of neurodiversity um
00:50:29.800
um and i mean autism exists so it's it's probably inborn you've shown you showed that your your
00:50:36.920
article the geek syndrome that parents who are computer program computer programmers engineers
00:50:42.040
often have children with autism not all of them but you know many do um so do geneticists they
00:50:49.800
understand like why autism exists because i i think this goes to your neurodiversity idea because i remember
00:50:55.960
reading a book about depression and like they think that well reason why depression exists it's there's
00:51:01.240
sort of an adaptive quality to it it um provides these you know allows you to have depressive realism
00:51:07.480
um and there's sort of some benefits to it as well or otherwise it wouldn't exist so is there any
00:51:11.720
theories like that about autism as well yeah sure absolutely i mean think about it it's like we know in
00:51:18.120
a rainforest that there are many different kinds of trees right and that actually the diversity in a
00:51:24.760
uh biological community like a rainforest in fact adds to the resilience of that community in the in the
00:51:30.920
face of changing climate you know for instance um why do we think that there's only one type of
00:51:38.360
quote-unquote normal human brain you know it's if you think about it just in very basic terms it's kind
00:51:45.720
of a naive idea you know but it came from sort of the ascendance of uh psychiatry in the 20th century
00:51:52.200
where you know there's this normal kind of brain and this guy you know a psychiatrist is going to
00:51:58.600
help you get there if you're not quite there or well adjusted what's that you want to be well
00:52:03.880
adjusted that's what they're trying right you want to be well adjusted and you know eventually they
00:52:08.040
came along with uh you know psychopharmaceuticals if you know if you have a serotonin uptake problem
00:52:13.960
in your brain which by the way has never been proven scientifically you'll take antidepressants you know
00:52:19.800
the truth is antidepressants do you know work for a lot of people but we still don't know why you
00:52:25.480
know so the notion that you know if your brain if you have depression or if you have anxiety
00:52:30.760
there's something wrong with your brain because there's really only one kind of well-adjusted human
00:52:35.240
brain it's a very naive idea you know but uh autism is another sort of avenue towards that understanding
00:52:42.840
and the word neurodiversity came from a sociology student named judy singer in australia who was
00:52:49.080
part of one of the very first online communities for autistic adults uh in the um in the 1990s
00:52:58.440
and uh you know the internet came along right when the diagnosis started going up and one of the things
00:53:05.400
that lorna did by changing the criteria was that she made the diagnosis available to adults for the
00:53:11.880
first time and so i went back and looked at uh some of the very first online conversations had by
00:53:19.320
autistic people uh and one of the questions that kept coming up is can connor's syndrome which was
00:53:26.680
considered you know a form of childhood psychosis can it persist into adulthood because i was diagnosed
00:53:33.960
with connor's syndrome when i was young you know i'm an adult and i still think i'm kind of weird you
00:53:37.960
know somehow and so the people who were in these early online communities literally had to figure
00:53:44.440
out that they were autistic adults because the mainstream uh uh you know textbooks didn't support
00:53:51.400
that idea so anyway so uh judy was learning about something called the social model of disability
00:54:00.040
there are a couple of different ways of looking at disability one is that you're disabled there's
00:54:05.160
something wrong with you it should be fixed you know the other way to look at disability is to say
00:54:11.080
well maybe if you say you're really disabled maybe there are things that society could do
00:54:17.800
to help you you know lead a satisfying life so it's like if you're in a wheelchair and there are no
00:54:24.040
wheelchair ramps or no accessible classrooms or you know there's just stairs you're really disabled you
00:54:31.240
know but if you live in a town with you know good disability access and and uh you know accessible
00:54:37.080
movie theaters and accessible public transit you can get around and so judy started to think about
00:54:44.280
um autism in a disability context and particularly in the context of the social model of disability
00:54:51.960
and autism had been defined as just sort of a checklist of deficits and impairments for decades you can't do
00:54:59.480
this you can't do that you're not good at this you're not good at that well you know it turns out
00:55:04.200
that a lot of autistic people are good at something you know they're not all geniuses you know they can't
00:55:09.640
all uh you know count toothpicks fall under the floor like rain man they're not all savants but you
00:55:16.280
know a lot of autistic people are good at something particularly in their area of special interests
00:55:21.240
why do we you know judy started asking herself why do we only talk about ourselves in terms of
00:55:27.080
deficits and impairments so she came up with this word neurodiversity based on the word biodiversity
00:55:34.840
which we all know is a good thing so that autistic people and people with other conditions like adhd
00:55:41.320
and dyslexia uh could talk about themselves without sort of automatically putting themselves down
00:55:48.840
in a medical way and she hoped that the word neurodiversity would spread through the online
00:55:54.120
community in the same way that slogans like black is beautiful or gay is good had spread through
00:56:00.280
other marginalized and stigmatized communities in the 60s she hoped that the word neurodiversity
00:56:06.360
would do the same thing for uh people with autism and these other forms of cognitive disability and it
00:56:12.680
worked it went viral so with that in mind you know i'm sure there's people who are listening to this
00:56:19.240
their parents maybe they just found out their child um has autism is on the autism spectrum
00:56:24.520
and for many parents uh you know finding out that out can be devastating um because you know it doesn't
00:56:29.160
fit the plan right that they they have for their kids yeah so i mean any advice for parents out there
00:56:34.200
who are listening you know just found out their child's on the spectrum like what's the mindset they
00:56:37.880
should approach with what you just said this history of autism just given us like what is the best mindset
00:56:42.200
to go about and raising a child on the spectrum sure that's a very important question um the first
00:56:48.360
thing i would say is you know many of the messages that uh parents get when their kid is diagnosed uh
00:56:55.160
even sometimes from their friends you know they're very dire like you know they tend to go like your
00:57:01.720
kid will never get married your kid will never be able to go to college you know it's as if people
00:57:06.920
are trying to prevent them from having unreasonable hopes the truth of matter is you have no idea what
00:57:13.720
what your kid might be capable of when they grow up and uh the really the arc of autistic people's
00:57:20.520
lives particularly in the last 20 years or so uh has shown that autistic people are capable of
00:57:26.600
astonishing spurts of development even in middle age so you have no idea what your kid will be capable of
00:57:34.040
and i'll give you an example from today's news um there was a kid uh named i think jody unfortunately
00:57:42.040
i don't have his name on the tip of my tongue but he was basically non-verbal uh when he was a kid he
00:57:48.600
was he was growing up in england um you know many bad predictions were made about him but he had a
00:57:54.600
curious interest in birds he loved to watch birds through the window and it turns out that one of the
00:58:00.360
reasons why he loved to watch birds was because they could quickly fly away and escape you know unpleasant
00:58:06.520
surroundings which is what what he wished he could do well his kid you know instead of like saying
00:58:12.520
we you know will you stop staring out the window at birds all the time they got him a bird you know
00:58:18.200
and the kid the kid named bird and you know it's like one of the first things that he said and um
00:58:24.440
the kid got really into birds and by studying uh the science of birds he ended up becoming interested in
00:58:31.080
science in general anyway that kid is about to go to oxford as a road scholar and he was you know
00:58:39.480
he was basically non-verbal when he was young and by supporting the kid's special interest like
00:58:46.840
another of the bad theories that leo connor had was that autistic special interests were inherently
00:58:52.840
pathological like he one of connor's patients was a kid who could identify 18 symphonies after hearing
00:59:00.520
only a few bars before he turned two like you would hear a few bars and say beethoven you know and
00:59:07.320
connor thought it was very bad because kids couldn't possibly be interested in beethoven they're obviously
00:59:13.160
just trying to earn love from their unloving parents that's wrong you know the kid was really
00:59:18.760
into beethoven and other classical composers so autistic special interests as they're often called
00:59:26.680
are actually the basis for a future pathway into a successful life and that's something that
00:59:33.400
asperger knew like that kid with you know drawing the geometric figures in the sand who went on to
00:59:38.600
become an assistant professor of astronomy so autistic minds learn but in their own way like for many
00:59:47.320
decades it was assumed that autistic kids were incapable of learning well that's because they were in
00:59:52.200
institutions where there was no education going on you know so what i would say to parents is you know
00:59:59.160
obviously not every autistic kid is going to turn out to be some kind of a genius and uh the kid will
01:00:04.760
need definitely need you know many many different forms of support that will change over time and you
01:00:11.880
know if you're a parent you need to become a very powerful advocate uh with your kids school boards and
01:00:18.040
with practically everything uh in order to ensure that your kid leads a successful life but i would
01:00:25.160
also send parents of a newly diagnosed kid to see a relatively recent film called life animated which is
01:00:32.600
a story of how a uh it's a real life story of how a uh journalist named ron suskind had a kid who lost
01:00:39.960
speech uh suddenly they thought you know his life was basically over more or less they thought he'd have to
01:00:45.720
live in an institution and they used the kid's interest in disney movies to establish communication
01:00:52.440
with him again and that kid is now living on his own in his own apartment and he's a very charming young man
01:00:59.080
so what i would say to parents is don't despair um try to find good sources of information uh you know my book
01:01:08.520
can give you the history but for uh a parent i would suggest another book called barry presents uniquely human
01:01:14.600
um there's also a book called the real experts which is an anthology of writing by autistic adults
01:01:21.720
uh reflecting on what experiences help them get through life it's really important that
01:01:27.960
that autistic kids get role models of autism in adulthood um and you know they'll see that it's not
01:01:35.160
a hopeless situation which is the message that unfortunately many parents get when their kid is first diagnosed
01:01:42.120
don't lose hope right and i love that and what about for those of us who might not have autistic family
01:01:46.920
members but work or interact with individuals who are autistic i mean you're a non-autistic person who's
01:01:52.360
i'm sure talked to thousands of autistic people i mean i think a lot of people want to befriend and
01:01:57.720
help these people feel comfortable but they're not sure about what's the best approach i mean any advice
01:02:02.200
there yeah let them lead you know in a sense it's like uh don't you know i remember i had a very
01:02:10.440
important lesson uh actually because an autistic guy um who was really hilarious online um sort of got
01:02:18.920
in touch with me wanted to have coffee i went to meet him for coffee the whole time he was sitting there
01:02:23.880
i thought he was having the worst time he was like frowning at me he seemed very tense i thought oh god this
01:02:29.960
is terrible you know like this isn't working at all i'm not coming off as charming you know and uh
01:02:36.040
then you know i i thought it was you know not a good interaction then i got home and he was like
01:02:40.600
that was great you know when can we do this again so it's like it turns out that non-autistic people
01:02:47.320
have as much trouble parsing the body language and facial expressions and social signals of autistic
01:02:53.640
people as much as they have trouble parsing hours so don't assume that autistic person will respond
01:03:01.960
in uh you know non-autistic or neurotypical ways to your you know your little jokes or whatever they
01:03:07.720
may not get them uh they may have a very highly developed sense of humor and sarcasm but you know
01:03:13.720
they may miss a you know an ironic comment that you make or whatever just sort of let the autistic
01:03:19.160
person establish what level of communication they're comfortable with what methods of communication
01:03:26.440
they're comfortable with um if an autistic person looks away from you it doesn't mean that they're
01:03:32.120
bored or not listening or hostile it could mean that they're uh having trouble processing your
01:03:38.520
facial expressions at the same time that they're listening to your words so you know let them look away
01:03:44.680
they may be they may be even more interested you know than you can possibly imagine in what you're
01:03:51.240
saying but i would say you know sort of let the autistic person lead rather than enforcing some kind of um
01:03:59.160
uh you know standard of normal behavior which is based on non-autistic behavior and there are
01:04:04.840
organizations you can go you know if you're curious uh particularly for parents there are organizations you
01:04:10.920
can get in touch with like there's a group called aane the autism and asperger's association of new
01:04:17.080
england they have meetings for both autistic people and parents you can meet autistic people get to know
01:04:23.240
them uh and thus get to know not only your own child better but what your child's potential is
01:04:30.600
awesome steve we covered a lot we did this is great thank you well steve silverman thank you so
01:04:36.440
us your time it's been an absolute pleasure thank you i'm it's a thrill for me to be here
01:04:42.520
my guest today was steve silverman he's the author of the book neurotribes the legacy of autism in the
01:04:46.840
future of neurodiversity it's available on amazon.com and bookstores everywhere also check out our show
01:04:51.640
notes at aom.is slash neurotribes where you can find links to resources where you can delve deeper
01:05:12.440
well that wraps up another edition of the art of manliness podcast for more manly tips and advice
01:05:16.440
make sure to check out the art of manliness website at artofmanliness.com our show is edited by creative
01:05:20.760
audio lab here in tulsa oklahoma if you have any audio editing needs or audio production needs check
01:05:24.760
them out at creativeaudiolab.com we appreciate your support reviews on itunes this teacher helps
01:05:29.240
out a lot and as always until next time this is brett mckay telling you to stay manly