Hello, and welcome back to The Autistic Writer. In the previous instalment, I explained the various ways in which autism is defined by health authorities, diagnostic manuals, and leading autism charity, The National Autistic Society. This time, I will go into detail regarding the more nuanced understandings of what autism actually is.
my story
When I found out I was autistic (a formal diagnosis in 2019), I made a point of trying to engage with other autistic people online. I felt like I had found my people. But the online spaces can be very difficult for autistic people.
Bullying from non-autistic people is commonplace.
Often, autistic people who have only just realised they are autistic, and perhaps have not yet received a formal diagnosis, are abused, called liars, and are told they are faking it, and so on.
This online aggression struck me as odd. I was 54 years old when I received my formal diagnosis, after being on a waiting list for an assessment for nineteen months. But the diagnosis didn’t create my autism – I had been autistic all along. Understanding this point is the bedrock of a nuanced approach to answering the question, what is autism?
autistic people exist
We know autistic people exist; I am one of them. Autistic people often recognise autistic traits in each other. We are all different; all autistic people are unique individuals just like non-autistic people, but we recognise our similarities and overlapping traits in each other. We recognise these autistic traits as being different from the traits of non-autistic people.
Non-autistic people are a majority in society; autistic people are a minority. What puts us in the minority is our difference, and that difference is our autistic traits. But is that difference accurately represented by the diagnostic methods and terminology currently in use?
what we mean when we say autism
We often talk about people being autistic, and being diagnosed with autism, but people do not actually get diagnosed with “autism.” The most common diagnostic label currently being used for autism is autism spectrum disorder (ASD), sometimes called autism spectrum condition (ASC). ASD is an umbrella term, replacing what had previously been a variety of diagnostic terms such as Early Infantile Autism, Pervasive Developmental Disorder, Childhood Psychopathy, and Asperger Syndrome, for a few examples.
Some people with diagnoses of, for example, Asperger Syndrome, prefer to identify with that term. Others have adopted the practice of simply calling themselves autistic. A person identifying as autistic could have one of several different possible formal diagnoses. Some might not have a formal diagnosis at all, but have simply come to realise that they are autistic. When I talk about autism, it is meant as an inclusive term for all the various diagnostic types.
some brief historical points
The study of autism is a new and emerging field compared to most other physical and mental health-related studies. The first time autism was professionally recognised and pathologised was in 1925. To put into context how recent this is, 1925 was the year my mother was born.
The work in 1925 was done by Soviet-Ukranian child psychiatrist Grunya Sukhareva. She noticed that among the children in her care were a minority who shared unusual characteristics that separated them behaviourally from the other children. These characteristics were what we would now recognise as autistic traits.
Sukhareva make a clinical decision to characterise these traits as a syndrome, drew up a list of symptoms, and gave it a diagnostic label. This label was initially Schizoid Psychopathy, which she later updated to autistic psychopathy.
It is important to note that diagnostic terms evolve, and Sukhareva’s term autistic psychopathy should not be confused with the modern term of psychopath, which is very different from autism. Sukhareva’s terminology might have been influenced by the work of Swiss psychiatrist Paul Eugen Bleuler some years earlier. He was working on schizophrenia, and adopted the term autism. However, what he referred to as autism was very different from what we use the term for now. Autism is not psychopathy.
The point that is important for answering our question what is autism? is that sukhareva created a syndrome by observing behaviours of children, and grouping certain non-typical behaviours as symptoms of that syndrome. The symptoms could then be used as a diagnostic checklist to identify other children as “having” that syndrome. The process of creating the syndrome necessarily involved Sukhareva making an arbitrary decision regarding which behaviours to include, and which not to include.
what is a syndrome?
Syndrome is a medical diagnostic term. It refers to a collection of symptoms that co-occur, but for which the underlying cause is unknown.
after sukhareva
In the decades following Sukhareva’s initial work, other mental health professionals followed a similar path; spotting non-typical behaviours of children in their care, creating a syndrome based on arbitrary decisions about what to include and what not to include, and using that syndrome for diagnostics in other children. These professionals include Hans Asperger, Leo Kanner, and Ole Ivar Lovaas, among others. I will come back to these controversial figures in later articles.
A plethora of diagnostic terms and diagnostic criteria emerged over the years, such as the ones listed earlier, along with Autistic Disorder, Childhood Disintegrative Disorder, and others.
diagnostic issues
Over the years, as diagnostic terms for autism have changed and evolved, the diagnostic criteria have changed correspondingly. This has created a situation in which, in theory, a person could be given a formal diagnosis of autism (whichever term was currently in use), only for the diagnostic criteria to change a week later in such a way that the person would no longer be diagnosed under the new criteria. The opposite could also be true; a person could be assessed but not match the criteria for a diagnosis, only for the criteria to change later to such a degree that the person would have been given a diagnosis under the new criteria.
There are further complications. Currently in the UK, if you are an adult and want to be assessed for autism, the most common route is to be referred by a GP. The GP has to make a decision on whether it is appropriate to action that referral. But GPs are not trained in any great detail on autism. As gatekeepers for these referrals, most GPs are underqualified.
We know that many people who are initially refused a referral, particularly autistic women, eventually do get the diagnosis, but only after being misdiagnosed with mental health conditions such as Bipolar Disorder or Borderline Personality Disorder.
Even if a person is referred for assessment, the final decision on the diagnosis is a judgement call by the relevant specialist. Many medical diagnoses involve the judgement of the clinician – this is not unusual. But autism is an unusual case in the sense that there is no blood test to confirm it, no X-ray or scan to “spot” the autism in the brain (this is a subject that will be discussed further in a future article), and no microbiological autism “infection” that can be grown in a lab culture. Autism is not an illness; it is simply diagnosed behaviourally, based on the judgment of the clinician.
None of this is to say that clinicians carrying out diagnostic assessments have no expertise – of course they do. But it is important to recognise that the expertise is in matching a given individual to whatever diagnostic criteria happen to be in use at that time.
We have a situation in which the regularly changing diagnostic criteria for autism means that people can move into or out of a match for diagnosis, and in which the diagnostic process is, arguably, more tenuous than for other conditions. But the actual autistic people – real autistic human beings – do not change. We just carry on being our autistic selves, regardless of the whims of the professionals devising the diagnostic criteria.
autistic versus diagnosed autistic
All this leads us to the fork of a dichotomy: When we say someone is autistic, are we referring to people with formal diagnoses (which may or may not still be valid after changes in the diagnostic criteria), or are we referring to people who have the autistic differences they recognise in each other, regardless of diagnosis?
Is “true” autism only that which has an accompanying formal diagnosis (which may or may not still be valid after changes in the diagnostic criteria), or does it include people with all the autistic traits but who do not have a diagnosis? What about people who would definitely match all the diagnostic criteria currently in play, but who have no access to an assessment – are they allowed to be called autistic? What about those autistic people labouring under a misdiagnosis of some other condition – do they count as autistic or not?
There is a common opinion in society that only a formal diagnosis of autism really counts. But this is a very problematic view, for the reasons just discussed. This problematic opinion unfortunately leads to the bullying and abuse of people who have realised they are autistic, have chosen to identify as such, but do not have a formal diagnosis.
the value of a formal diagnosis
Formal diagnoses of autism can be hugely important. For some people, they open the door to much-needed support mechanisms such as care workers, reasonable adjustments at work, or disability benefits, for example.
Many people who pursue a formal diagnosis have reached a stage where they think they might be autistic, but they are unsure. Getting an answer from an expert can be hugely beneficial for their mental health. This was true for me, and receiving my formal diagnosis came as a huge relief.
conclusion
Autistic people exist. We are different from the neuromajority in our behaviours, the way our senses work, our thinking methods, and the way we interact with the world and other people. We can and do recognise these differences in each other. While we autistic people are all unique individuals, each with our own personal autism fingerprint, there is so much commonality in our autistic traits that we can accurately say autism is a thing.
Having a formal diagnosis of autism is different. Formal diagnosis is changeable, tenuous, and thus ultimately unreliable as to whether a person is autistic in the sense described in the preceding paragraph. This does not mean formal diagnosis has no value. It can have important social and financial benefits for the autistic person. But the formal diagnosis, or lack of, does not create or rule out the presence of autism in an individual.
nuance
An autism diagnosis does not create autism; autistic people are autistic regardless of their diagnostic status. A diagnostic paradigm only defines autism within the limits of that paradigm, and does not necessarily reflect reality.
That’s all for this time. Take care.
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