Hello, and welcome back to The Autistic Writer. What actually is autism?
My story
When I found out I was autistic, back in 2019, I threw myself into learning everything I could about autism. Sadly, the first things I learned tended to be the common myths and stereotypes attributed to autism. But as I persevered, I began to develop a more nuanced understanding. When it comes to defining what autism is, that nuance is profound.
By my estimation, I have now devoted roughly three times more hours, effort, and intensive study to understanding autism than I did in earning my first-class honours degree in English Literature.
Autistic people often have very intense interests. The subject of autism became, and remains, my most intense interest.
what is autism?
There are two types of answers to this question. One of those answers will seem quite simple. The other is far more complex. Neither answer alone, however, gives the full story; an understanding of both is required. In this instalment of The Autistic Writer, we will explore the simpler answer. The more complex approach will be covered in part 3.
A good place to start with simple definitions of autism is to look at what official bodies have to say on the matter. Our first stop will be the UK’s National Autistic Society (NAS). If you visit the What is autism area of the NAS website, is has this to say (this is a direct quote):
Autism influences how people experience and interact with the world. It is a lifelong neurodivergence and disability. Autistic people are different from each other, but for a diagnosis they must share differences from non-autistic people in how they think, feel and communicate.
Being autistic means you may feel things and react to them differently to non-autistic people. You may find socialising confusing or tiring, and you may become overwhelmed in loud or busy places. You may have intense interests, prefer order and routine, and use repeated movements or actions to calm yourself or express joy. You might mask your discomfort to fit in, which can lead to mental illness.
There is a lot of information in these two short paragraphs from the NAS, but we are focusing on a definition of autism, so we will take the key elements, which indicate that autism is:
- A neurodivergence (a difference in the way the brain functions)
- A disability
- Lifelong
- A difference in the way you think
- A difference in the way you feel
- A difference in the way you communicate
- A difference in social behaviour
- A difference in intensity and restrictive focus on interests
- A difference in the use of repeated movements, actions or routines
These “differences” are different from typical human behaviour.
The National Institute of Mental Health (NIMH) in the US explains autism (specifically calling it autism spectrum disorder) like this:
What is Autism Spectrum Disorder?
Autism spectrum disorder is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, it is described as a “developmental disorder” because symptoms generally appear in the first two years of life.
The NIMH clearly call autism a disorder rather than a difference here, which reflects a difference in the cultural approach to autism in American and UK healthcare settings. Like the NAS, the NIMH refers to differences in communication and behaviour.
Now, let’s have a look at what the UK’s National Health Service (NHS) says
- Autism is a difference in how your brain develops that affects how you see and experience the world. It is often called a type of neurodivergence.
You might also hear autism called autism spectrum disorder (ASD). This is the medical term for a diagnosis of autism. - Being autistic can affect how you communicate with people and understand them, and how people understand you.
- It can also affect how you think, learn and pay attention to things and how you respond to light, sounds, smells, tastes and touch.
- Some autistic people have a learning disability. Some have average intelligence or above average intelligence.
- Autistic people are more likely to have some physical and mental health conditions, such as epilepsy, anxiety, eating disorders or depression.
- ADHD (attention deficit hyperactivity disorder) is also more common in autistic people.
- Autism is something you’re born with. It’s not an illness and there is no treatment or cure, but there are ways of managing it and getting support.
- It’s not known what causes autism, but it can sometimes affect people in the same family. It is not caused by vaccines or medicines.
Some important clarifications are necessary regarding the NHS definition. The physical health and mental conditions it mentions are common in autistic people, but these conditions are not part of autism – they are separate. Secondly, the link with ADHD is currently subject to various hypotheses and speculations, and is something that will be covered in a future article.
The NHS description also tells us that autism is a neurodivergence, and is reflected in differences in communication and sensory differences.Although the definition quoted here does not refer to social differences and repetitive or restricted behaviours and interest, the website does go on in much greater detail subsequently, covering these traits.
There many other reputable resources online that give definitions answering the question what is autism? but they all follow the basic definitions seen above.
diagnostic manuals
Autism is also defined in formal diagnostic manuals used by professionals carrying out diagnoses. The two most well known manuals are:
- The Diagnostic and Statistical Manual of Mental Disorders (DSM), currently in version 5 (DSM-5), published by the American Psychiatric Association.
- The International Classification of Diseases (ICD) currently in version 11 (ICD-11), published by the World Health Organisation.
I’m grateful once again to the National Autistic Society for providing helpful summaries of the diagnostic criteria used by The DSM-5 and ICD-11, on their website. The following summaries are quoted from there:
DSM-5 criteria
- criterion A: persistent deficits in reciprocal social communication and social interaction
- criterion B: restricted, repetitive patterns of behaviour, interests or activities
- criterion C: symptoms must be present in the early developmental period
- criterion D: symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning
- criterion E: these disturbances are not better explained by intellectual disability or global developmental delay.
ICD-11 criteria
- persistent deficits in initiating and sustaining social communication and reciprocal social interactions that are outside the range of typical functioning given the person’s age and level of intellectual development
- persistent restricted, repetitive and inflexible patterns of behaviour, interests, or activities that are clearly atypical or excessive for the person’s age and sociocultural context
- the onset of the disorder occurs during the developmental period, typically in early childhood
- note that characteristics might not fully manifest until later in life due to increased social demands
- characteristics result in significant impairment in personal, family, social, educational, occupational or other important areas.
summary of autistic traits in formal definitions
With all the above in mind, we can summarise the key elements that define autism according to health authorities, diagnostic manuals, and the leading autism charity, the National Autistic Society. These traits are:
- Neurodivergence.
- Sensory differences.
- Communication differences.
- Social behaviour differences.
- Restrictive and/or repetitive behaviours.
- A lifelong (not acquired) difference.
- Not an illness or disease.
- Considered a disorder or condition.
Autism involves differences in the way the brain develops and functions, resulting in ways of thinking, perceiving and interacting that differ from those considered typical.
autistic pride and benefits
Various polls carried out online in autistic groups indicate the overwhelming majority of autistic people (although not everyone) are proud of their autism, would not change it, and enjoy the many benefits that come with being autistic. This casts doubt over the validity of medicalised, deficiency-based definitions used by diagnostic manuals and health authorities.
Beneficial autistic traits include, but are not limited to:
- Experiencing sensory joy more intensely than non-autistic people.
- Great attention to detail.
- Heightened pattern-recognition ability, which helps in spotting and resolving problems.
- Structured, logical reasoning.
- Powerful sense of fairness and justice.
- High levels of empathy.
If you have previously been unfamiliar with the definitions and diagnostic criteria for autism, then you might have spotted a seeming contradiction in the descriptions above. It is reasonable to ask the question, if autism is not an illness, why is it listed in mental health manuals and on health websites, why is it diagnosed by mental health professionals, and why is it called a disorder or condition? And if autism is a disorder, how can it have benefits?
These concerns go right to the heart of a fully nuanced understanding of what autism is, and will be covered in an upcoming article. But for now, the autistic traits listed above give you a reasonable idea of what is generally considered autism is.
nuance
Many of the published definitions describe autism in terms of differences that are problems or deficits. Words like restrictive, inflexible, and disorder paint a very negative picture of autism that many autistic people would challenge. There are real benefits to many autistic traits.
The study of autism is still a relatively new and developing field. The diagnostic manuals have repeatedly changed their definitions of autism and their diagnostic criteria over the years, and will almost certainly do so again.
Professionals within the autistic community, from psychiatrists and psychologists, to doctors, therapists and teachers, are often in serious disagreement over what autism really is.
The disconnect between how autistic people and their advocates see autism (as a difference which is often beneficial) and the medicalised, deficiency-based, changeable descriptions in health authorities and diagnostic manuals, is one of the most contentious issues when it comes to answering the question, what is autism?
I hope you return to this website to read more.
That’s all for this time. Take care.
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