‘The key to autism is the key to the nature of human life’ (Lorna Wing, 1996).
Autism, according to the DSM-5, is a neurodevelopmental disorder characterized by persistent deficits in social communication and social interaction with restrictive or repetitive patterns of behavior, specialized interests, and activities (DSM-5-TR, 2024; see also Frith, 2008). An estimated 1 in every 100 people in the UK has a diagnosis of autism, meaning that there are approximately 700,000 people in the UK with a formal diagnosis (BMA, 2024). There are many more who self-diagnose themselves as being on the spectrum, but who chose to forego the formal diagnostic procedure. Often the focus in the scholarly literature and in healthcare settings concerns autism in children. Many wrongly assume that autism is a disorder of childhood only – this a myth (see Beardon, 2021). This paper will consider common myths about autism in adults, such as the one above, and will explore the DSM-V and ICD-10 definitions of autism to contrast reality with misconceptions. This essay will explore the scholarly literature on autism in adults and will contrast the reality of autism with common myths and misconceptions surrounding the disorder.
The DSM-5 and the ICD-10 are the standard tools used by
psychiatrists and clinical psychologists in the diagnosis of autism. The
history of autistic studies also offers insights into the correct meaning of
autism in contrast with many of the popular myths and misconceptions which will
be considered in this essay (See Feinstein, 2010; Donvan and Suker, 2016; Silberman,
2015). Three key figures emerge in the history of autism (Leo Kanner (1894–1981),
Hans Asperger (1906–1980), and Lorna Wing (1928–2014)) who have shaped our
general understanding of autism more than any other scholars – mention will be
made of them later. This paper will conclude with an emphasis on the strengths
of the autistic mind and the many positive traits associated with autism. Some
of the most successful people in world are autistic – not least to mention
Temple Grandin who is a tremendously gifted academic and animal scientist who
is also autistic (Grandin, 1995; Grandin, 2013; Sacks, 1995, pp. 233–82).
Searching for a Definition
In order to recognise a counterfeit, one
must recognise first of all what is genuine. This means correctly defining
autism in order to contrast this definition with myths and misconceptions
surrounding the condition. There have been many helpful studies of autism which
inform the following discussion (see Frith, 2003; Fletcher-Watson & Happe,
2019; Wing, 1996). According to the DSM-5, there are two key diagnostic
indications of autism to which we have already referred:
1. Persistent
deficits in social communication and social interaction.
2. Restricted,
repetitive patterns of behaviour, interests, or activities.
Many autistic people would also speak of their hyper- (over) or hypo- (under) sensitivity to sensory input, ‘or unusual interest in sensory aspects of the environment’ (DSM-5, 2024). Since the publication of Lorna Wing’s landmark study The Autistic Spectrum (1996), it has been customary to refer to an autistic ‘spectrum’ or ‘continuum’ ranging from high functioning adults and children (average or above average IQ), who often lead independent lives with some support from social and mental health services, to low functioning children and adults who require constant support and attention to manage daily living. Lorna Wing coined the term ‘Asperger’s Syndrome’ (AS) to define high functioning autistic adults and children who show average or above average IQ levels – and sometimes even savant abilities such as a prodigious memory, a talent for numeracy, or outstanding musical skills and perfect pitch. Such children were first identified by Hans Asperger working in Vienna whom he described as being like ‘little professors’ in the way they spoke and the interests that occupied their attention. According to the ICD-10, Asperger’s Syndrome (AS) ‘differs from autism primarily in the fact that there is no general delay or retardation in language or in cognitive development. This disorder is often associated with marked clumsiness [or dyspraxia]. There is a strong tendency for the abnormalities to persist into adolescence and adult life. Psychotic episodes occasionally occur in early adult life’ (ICD-10, 2019).
Lorna Wing argues that autism is a spectrum
disorder with Leo Kanner's syndrome (low functioning autism) at the one end of
the spectrum and Asperger's Syndrome (AS) (high functioning autism) at the
other. Nowadays everyone is diagnosed with Autistic Spectrum Disorder (ASD) in
England and Wales regardless of their functioning capabilities to make sure
everyone gets the support they need such as Personal Independence Payment (PIP),
carer’s allowance, housing benefit, Universal Credit (UC), support in
education, and access to psychological services and therapies. Some would
stress that autism is a form of a neurodivergence like dyslexia or ADHD,
meaning that the autistic brain is wired in a fundamentally different way to
neurotypical brains. Autistic activists often prefer to drop the idea that
autism is a ‘disorder’ and prefer to speak of it plainly as the autistic
spectrum, as a ‘condition’ (i.e. autistic spectrum condition or ASC), or simply
as ‘autism’. Some embrace the idea of Asperger’s Syndrome and refer to
themselves as ‘Aspies’. However, medical professionals no longer use the term
‘Asperger’s Syndrome’ due to Hans Asperger’s involvement with the Am
Spiegelgrund clinic where many children who were deemed defective to the Nazi
regime were euthanised (Czech, 2018). The latest research suggests that
Asperger, though not a member of the Nazi party, was nonetheless sympathetic to
some of its aims.
Myths and Misconceptions
The history of
defining autism and its causes has been fraught with tension and heated debate.
According to Donovan and Suker, ‘Given the elasticity of the definition,
it has been easy for competing interests to cast autism as what they want it to
be, which has at times led to enormous strife. Over the decades, autism has
been seen as a behavioral, or a medical, or a psychogenic challenge. It has
been blamed on mothers, and it has been blamed on vaccines. It has been
answered with “substitute mothering”, megavitamins, facilitated communication,
slaps in the face, hugging therapy, and, in some African countries, with exorcism.
At this time of writing, autism is viewed as occurring on a spectrum, a concept
that has the virtue of promoting inclusiveness but has also caused acrimony
between those who see autism as a tragedy and those who claim it as a gift and
an identity’ (Donovan and Zuker, 2016, pp. 370–71). Donovan and Zuker highlight
the various myths and misconceptions surrounding the meaning of autism – of
which there are many. Here are some of the most common ones:
1. ‘All autistic people are the same’. This myth fails to
recognize that autism is a spectrum disorder with considerable variety across
the spectrum or continuum. For example, some adults with autism may be high
functioning and highly capable such as the type identified by Hans Asperger who
would go onto to excel in their special interests, while others may need
constant supervision and care such as those children first identified by Leo
Kanner, some of whom are non-verbal or catatonic.
2. ‘Autism is caused by ‘refrigerator parenting’. This
was a popular myth in the history of autism – even Leo Kanner subscribed to it
at one time. It was alleged that autism was caused by cold or heartless parenting,
especially ‘refrigerator mothers’ who had failed to provide the proper warm and
loving environment for their children. This, of course, is nonsense. Autism is a
neurodevelopmental disorder with a strong genetic component, it is not caused
by bad mothers – regardless of how cold or warm their hearts are towards their
children.
3. ‘Everyone is on the spectrum somewhere’. This is
similar to a related myth that everyone is ‘a little bit autistic’. This is a
misunderstanding and misapplication of the word ‘spectrum’. The autistic
spectrum is essentially a continuum for people who are already diagnosed with
autism. It does not include everyone. It would be like saying, ‘I’m a little
bit diabetic because I have a weakness for sugary snacks’. There is no such
thing as being ‘a little bit autistic’, just as there is no such thing as being
‘a little bit diabetic’. You either have autism or you don’t. That’s an iron
law of logic. It is a spectrum for people already on the spectrum, not for
neurotypical individuals who have some autistic-like traits such as a desire to
line stationary up on the desk at work or arrange things neatly at home.
4. ‘Autism only affects children’. This essay has already
touched on this myth and shown that adolescents, adults, and elderly folk may have
a diagnosis of ASD. Children with autism grow up to become adults with autism,
meaning that there are many adolescents, adults, and seniors with a diagnosis
of autism. This is because when you are autistic, you are autistic for life. It
is a lifelong developmental condition. It doesn’t reduce with age. It cannot be
cured. Some people with high functioning autism may have learned how to behave
in a socially acceptable manner as adults among neurotypicals. This is often called
‘masking’ in the autistic community, but it comes at a great cost to the mental
and physical health of the person with autism. ‘Masking’ or camouflaging the
symptoms of autism demands much psychological energy and can be ruinous to
mental and physical health when suppressing hidden neurodiversity (See Price,
2022).
5. ‘Autistic people cannot empathize with others’. This
is a myth with a hint of truth. Autistic people are not necessarily
unempathetic, but they may struggle to show their empathy with words, facial
expressions, or body language. A key problem for people with autism is an
inability to recognize and think about the thoughts of others. This is known as
Theory of Mind (ToM) and was developed by Uta Frith to explain autistic
cognition (See Frith, 2003). She also pointed out that autistic people often
have an inability to integrate particular things into coherent wholes. They see
the individual trees in a forest rather than the woods surrounding them. In
other words, they have weak central coherence. This can lead to problems or
deficits with communication such as showing empathy. However, far from being unempathetic,
people with autism are often over-empathetic and may feel overwhelmed by their
own feelings of empathy, especially if they are struggling to express their
emotions.
6.
‘The MMR vaccine
causes autism’. The myth that the MMR vaccine causes autism originated with the now-discredited
study published by Andrew Wakefield, a former British doctor, in The Lancet
in 1998. The myth spread like wildfire and many parents refused to have their
children vaccinated. This study was eventually thoroughly discredited, and
Andrew Wakefield was stripped of his licence to practice medicine in the UK
(Deer, 2011). Modern vaccines are perfectly safe, thoroughly tested by the
scientific and medical community, and do not cause autism in children. However,
the persistence of the myth remains in the antivaxxer community, especially in
America where there is widespread opposition to Big Pharma.
7. ‘Bad parenting causes autism’. This is similar to the
‘refrigerator parenting’ myth. Autism is a neurodevelopmental disorder; it is
not caused by bad parenting. Autistic children who behave inappropriately in
public do not do so because their parents cannot discipline or control them
properly. They are behaving in this way often because they are experiencing an
autistic meltdown due to social or sensory overload. They are overstimulated by
their environment or situation. Some people with autism may flap their hands,
play with fidget toys, pace round the room, rock back and forth, scream or
shout, or repeat words and phrases to themselves over and over (known as
echolalia). They are not behaving badly or misbehaving, they are just
expressing themselves. These behaviours are known as “stimming” or
self-stimulatory behaviour in the autistic community and should be encouraged
rather than supressed.
8. ‘People who make eye contact cannot be autistic’. Some
autistic people, perhaps the majority, do struggle with eye contact. This is
because autistic people are generally happy doing their own thing in their own
company. The word ‘autism’ comes from the Greek word autos meaning
‘self’. The word ‘autism’ conveys the idea of ‘being absorbed in oneself’. This
may explain why some autistic people show disinterest or do not make appropriate
eye contact for neurotypicals. They may also find it socially uncomfortable to
look into someone else’s eyes. Some autistic people learn how to make eye
contact through practice or through gazing at the bridge of the nose rather
than directly in the eyes. A lack of eye contact is not essential for a
diagnosis of autism, though it may be a contributing factor towards diagnosis.
9. ‘People with autism cannot be successful, get married,
or live a normal life’. Some people with autism are severely disabled and will
need constant support throughout their life. However, this does not mean they
can have no quality of life. They may indeed have the love and support of a
good family and carers who make their world a better place. Many autistic
people, especially those who are deemed high functioning, may attain an
excellent quality of life. Temple Grandin is a perfect example of this as a
successful scientist with a string of PhDs, numerous published books, and her
own thriving business. Many autistic people do in fact go on to get married and
live a “normal” life – whatever “normal” is supposed to mean.
10. ‘Autism is a modern invention of psychiatry’. Although
autism is a relatively recent diagnosis in the history of psychiatry, there
have been many individuals with autistic traits and pervasive developmental
disorders in history, not least the famous case of Hugh Blair of Borgue – a
retrospectively diagnosed adult with autism (Houston & Frith, 2000). Interestingly,
a
feral child found in 1798 known as Victor of Aveyron was also documented with
symptoms that would now be classified as autism. Some children diagnosed with schizoid
psychopathy or even childhood schizophrenia were probably autistic in the time
before Hans Asperger and Leo Kanner coined the term ‘autism’. These are simply
a few examples. Many people with autism would have been detained in the old
asylums, or would be hidden by family members, or perceived by society as
eccentrics, especially if affluent. That doesn’t mean that autism didn’t exist
before the modern period. It simply means that we have got better at diagnosing
and recognising autism in society. Contrary to popular belief, there is not an
epidemic of autism, only a recognition of it by society.
Strengths of the Autistic Mind
Many people
within the autistic community refer to their condition as a form of
neuro-divergence similar to dyslexia, ADHD, dyspraxia, and Tourette’s syndrome.
Neurodivergence comes with many positive traits such as attention to detail,
commitment, deep focus, keen observational skills, a highly logical approach to
situations, expertise in a special interest, acceptance of others, integrity,
honesty, loyalty, and commitment. Autistic people wish to be seen as
‘different, not less’ – the famous saying popularized by Temple Grandin. In her
book, The Autistic Brain: Exploring the Strengths of a Different Kind of
Mind (2013), Grandin considers how it is possible to understand and
interpret autistic behavior from the perspective of neurodiversity – enabling
society to better see the strengths of autistic people. This might include the ability
to focus intensely on special interests or demonstrate savant skills and
abilities such as prodigious musical talent, and to think and reflect in ways
that might be different, but deeply valuable to society. As a public
figure and representative of the autistic community, Temple Grandin encourages
society to think from the point of view of an autistic person – enabling society
to ‘think outside the box’ and to embrace different ways of thinking rather
than merely dismissing them as irrelevant. In this sense, autism should not be seen as a disability, but as an ability
– a way of seeing the world with different eyes. Society should accommodate
autistic people. ‘Nothing about us, without us’ as the saying for disability
rights goes. In the words of Lorna Wing, who had a severely disabled daughter
with autism:
Those of us who live and/or work with children and
adults with autistic disorders have to try to enter their world, since they
cannot find their way into ours. We need to learn to comprehend and empathize
with autistic experiences in order to find ways to help each individual cope
with a system of social rules that is alien to them. The reward for the effort
involved is a deeper understanding of human social interaction and an
appreciation of the wonder of child [and adult] development. The key to autism
is the key to the nature of human life (Wing, 1996).
Autistic people
are not broken or defective (Garcia, 2021). They are just different – perhaps quirky,
unusual, geeky, or super smart. Society needs to change to reflect this
awareness, end the stigma surrounding autism, and embrace neurodiversity in all
its colorful forms.
This paper has
considered the meaning and definition of the word ‘autism’ according to the
official diagnostic criteria in the DSM-5 and the ICD-10. It has contrasted these
official definitions with the many myths and misconceptions about autism with the
aim of ending stigma and misunderstanding. It has opened a window into the
hidden strengths of the autistic mind and considered the example of Temple
Grandin as a successful autistic person who is ‘different, but not less’. The
aim has been to bust many of the myths about autism and to present the genuine
artifact in place of the many counterfeits in the history of autism.
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