Masterpost: Autism, Diagnosis, and Identity
Especially when writing in a modern real-world setting, one thing to take into account when thinking about your autistic character is their diagnosis status. Diagnosis might sound straightforward, but there are actually many things to take into account when talking about it. In this masterpost, you will find factual information about diagnoses - how they work, what they look like concretely, what are their shortcomings as well as some words about self-diagnosis - and questions to ask yourself when writing your autistic character.
What is autism, officially?
Autism is a complicated concept and we spend the majority of our time on this blog trying to explain it in a nuanced and multifaceted way. If you haven’t read it already, we suggest reading this masterpost about how to write an autistic character. Another post we have helps specify what autism is; this post describes different functioning labels and why they aren’t particularly beneficial or useful. The main thing to understand about functioning labels in the context of diagnosis is, generally, a diagnostician is required to specify levels of functioning in an autism diagnosis. The autistic community has a rather large definition of the concept, while the “official” definition of who counts as autistic is somewhat narrower.
Diagnosing autism is often a difficult process. Since we don’t know the source(s) of autism on a biological level, we can’t do, for example, an easy test like a brain scan to check for autism with absolute certainty. As a consequence, a professional who wants to know whether or not someone should be diagnosed with autism will look at that person’s behavior first and foremost, and, if possible, will ask questions about their subjective experience. As a result, the diagnostic criteria focus exclusively on the person’s behavior.
Here are the DSM-V criteria, and here is a link to a PDF which lists stereotypical examples for each of the criteria. The DSM-V is used in many countries around the world as a reference to diagnose mental illnesses and other conditions, in most cases these are the criteria that will be used during diagnosis. Other classifications with other sets of criteria exist, such as the CIM-10 (which still recognizes Asperger’s Syndrome and autism as separate diagnoses), are still in use in some countries.
A brief history of the DSM
The DSM is meant to describe all known mental illnesses recognized by the American Psychological Association’s (APA). There have been five editions to date, and many changes have been made to which disorders and mental illnesses are considered valid and their criteria. These changes were made in response to new research about the mind in general or about specific disorders.
The DSM is written based on research published by mental health professionals (practicing therapists, psychology researchers and students of researchers, psychiatrists, doctors, etc.). To get research findings recognized by the APA, the findings must be replicated enough times across published literature that any reader can be confident in the conclusions made by researchers.
If enough research emerges which prompts the board of the APA to reconsider the way the criteria in the DSM are written, and enough criteria are changed that the current edition stops being clinically useful or relevant to research, the DSM gets rewritten, and a new edition published. There are many debates about what criteria to include and which diagnoses are considered valid. Some diagnoses are added, removed, or changed in new editions of the DSM. The currently accepted edition of the DSM is the DSM-5 (or DSM-V).
In the DSM-5, there were several major changes, including grouping together Asperger’s Disorder, Autism, Pervasive Developmental Disorder Not Otherwise Specified, and related disorders into the broader category of Autism Spectrum Disorder. Some people were diagnosed with, for example, Asperger’s Disorder before this change was made, but would now meet the criteria for Autism Spectrum Disorder. They do not need to get re-diagnosed, and mental health professionals can still take their diagnosis into consideration.
Here are some things to consider :
When and where was your character diagnosed? What was the diagnostic manual used during their diagnosis, and how does that affect their identity? You might find part of our functioning labels masterpost about Asperger’s Syndrome useful for more detail about this specific diagnosis
Which diagnostic criteria does your character meet? Are there some criteria they don’t meet? How did that influence the diagnostic process?
How diagnosis works
Diagnoses are given when someone comes to a professional/clinician with experiences causing them distress or impairment. Depending on the country, there are multiple professionals qualified to give diagnoses - doctors, psychologists, psychiatrists, for example - and they have to collect evidence in order to make diagnoses. In order to do so, some researchers develop tests to help check whether someone meets diagnostic criteria, and standardize them to large groups of people to make sure the tests are valid, i.e. truly measure what the researcher wants the test to measure. These tests are then used to determine whether or not someone can be diagnosed, that is, whether or not they meet a sufficient number of criteria.
In general, a diagnosis is given if someone meets a certain number of criteria within the list. For an Autism Spectrum Disorder diagnosis, someone must meet the criteria of “persistent deficits in social communication and social interaction across multiple contexts” and “restricted, repetitive patterns of behavior, interests, or activities.” They can meet these criteria currently or in their history, and the DSM-V mentions symptoms may be masked later in life, but must have shown up during early development. The symptoms must also cause distress or impairment and must not be better explained by a different disorder.
The diagnostic process itself can vary from country to country. Typically, there are two main phases to a diagnosis: first a screening, and then a full evaluation.
If parents, teachers, healthcare professionals or the person themselves suspect a child or adult is autistic, they will go to a professional, usually a pediatrician, psychiatrist or psychologist. Different screening tools can be used, depending on the context and the age of the person to be diagnosed. They include questionnaires filled out by the person or their relatives, guided interviews or short tests in which the person is asked to demonstrate a variety of behaviors. The Autism Quotient is an example of a screening tool for adults, the M-CHAT is a screening tool for children. You can download these tools as well as others on this page. The screening is usually a short process that doesn’t last more than one hour. Different tools are used for children and for adults. In some places, children may be systematically screened at a certain age, at daycare, school or at a well child appointment.
If the screening shows that there is a possibility that the person is autistic, they will undergo a full evaluation. This evaluation is usually done by at least one, but up to a team of professionals which can include psychiatrists, psychologists, nurses, speech therapists, occupational therapists, psycho-motor therapists, etc. This is where the standardized tests are used. In most cases, the person will have to take at least a cognitive test (IQ test) and a test more specific to autism, in which their abilities in the domains of communication and social interactions, as well as specific autistic traits, are recorded, such as the ADOS. Here is a video where you can see an example of an ADOS test for a child. Family members might be questioned about the early childhood of the individual as well as their daily life. This phase of diagnosis is a lot more involved and can span several days.
After diagnosis, the professional will meet with the person who was being diagnosed and/or their parents to explain the results in detail. This is also usually the point where treatment/management plans will be discussed, focusing on the areas of need discovered during diagnosis. For example, if the person showed lots of sensory difficulties but no problem with speech, they might be advised to go see an occupational therapist rather than a speech therapist. This is a link which discusses what a diagnosis process can look like for an older child or teenager.
This description of how diagnoses are given does not have to match your story, especially if the setting is different. It’s a guideline, and you can do more research and thinking on what this process may look like in your story. Here are some questions you can consider during this process:
Where does your story take place - a certain country, a different planet, a fantasy setting? Are there mental health professionals there, or some kind of doctor? If the place exists, what diagnostic processes are common there? If it doesn’t, what can you imagine a diagnostic process would look like? Is their concept of autism similar to ours? What are the differences and how do they reflect on the diagnostic process?
When is your character diagnosed? If on earth, you may look up what mental health resources were available in the past, or imagine what mental health resources would be available in the future. If somewhere else, how do you imagine diagnostic tools evolved? Are there diagnostic tools at the time of your story? Is someone trying to build a process of diagnosis? Do the clinicians in your story know what autism is?
If you wish to narrate in your story the diagnosis scene itself, here are some resources.This Musings of an Aspie blog post is about getting professionally diagnosed as an adult. Another resource is this ~14 minute youtube video weighing the pros and cons of seeking autism diagnosis as an adult, including some personal anecdotes. This is a video that was made to explain children what will happen to them during an autism assessment.
Here are some things to ask yourself:
If the character being diagnosed is a child, how well do they understand what is going on and happening to them? What have they been told about the testing? How do they feel about it now, if you’re writing from the perspective of an adult reminiscing?
How do they feel during diagnosis? Are they scared? Overwhelmed? Do they find the testing difficult or easy? What do they think of the professionals diagnosing them?
What are they told about their diagnosis after the testing? How do they feel about it? Do their feelings change over time? Is any treatment/intervention/therapy plan started? If so, how does the diagnosed person feel about this process? Does it help them? Does it stigmatize autism?
The mess of professional diagnosis
Diagnosing autism is very difficult, for several reasons:
There’s huge territories of symptom overlap and comorbidity between autism, ADHD, dyslexia, and other neurodivergences, which makes differential diagnosis complex and not always successful.
Individual autistic traits, such as atypical social communication, sensory problems, executive dysfunction, etc. may also be seen in an individual without them being autistic.
Autism diagnosis is based on behavior and on external observation of this behavior. Its neurological sources aren’t clear and there is no easy, yes-or-no test. A lot will depend on the subjective point of view of the diagnostician, even though standardized tests help make the process more consistent.
Many people have learned to mask and hide their autistic traits, potentially making outside observation of these traits - if necessary to the diagnostic process - more difficult.
Autism has been studied more and is more well-known in some subtypes of the population (i.e. white, male children). That stereotype frames the public mentality, and that affects the mentalities of psychologists and neurologists studying and diagnosing autism. People that don’t fit this archetype may have a harder time getting diagnosed.
Diagnoses are made to be standardized enough that people halfway across the world will, hopefully, be talking about the same disorder or disease as a different doctor/psychologist/researcher. This is usually a good thing, but it can also mean that some people who have more atypical profiles (because of unusual identities, comorbidities, upbringings…) can sometimes be missed during the diagnosis process. It is also worth keeping in mind that the criteria evolve very regularly; someone who isn’t included now could be in ten years, and vice-versa.
People change. Someone who would have definitely been diagnosed as a child might not fit the criteria as an adult. This doesn’t mean they’ve stopped being autistic or been “cured”, it just means their traits have evolved as they’ve found better coping tools. Whether that’s the case or not, getting a diagnosis as an adult is often a lot more difficult. Not a lot of research has been done about what autistic adults are like. There can be fewer groups of mental health professionals open to giving autism diagnoses to adults; these specialists are less knowledgeable about it, and might be reluctant in many cases to give a diagnosis that could be marginalizing for the person.
These are all reasons that make diagnosis difficult and could lead to a misdiagnosis (or even to a refusal of even starting the diagnosis process). Misdiagnosis in very, very common, especially in women and in people who were diagnosed as adults. This is one of the many reasons that could lead someone to self-diagnose.
Something to take into consideration is the history of autism in the DSM, and how mental health professionals may use or misuse it for diagnosis. Originally, autism was thought to be a different form of schizophrenia (sometimes it was called Childhood Schizophrenia) because the children brought to clinicians for evaluations were noticing and being affected by sensory experiences which most people weren’t. Eventually clinicians noticed the diagnosed individuals did not truly meet the criteria for schizophrenia, though even today clinicians still confuse these diagnoses. Many autistic people can meet criteria for ADHD, and some people mistake the hyperfixations and sometimes rigid preferences of autistics for obsessions and compulsions of someone with OCD.
Here are some things to think about:
Was your character’s diagnosis story straightforward, or did they have to undergo misdiagnoses and referrals before finally being diagnosed? (Common misdiagnoses are OCD, ADHD, BPD, or schizophrenia, though these can also be co-morbid)
Did their symptoms look to a diagnostician like they could meet a diagnosis different from autism? Did your character have any other psychological conditions which affected the diagnostic process?
How confident was the professional making the diagnosis? Did any of your character’s identities, comorbidities or behaviors make diagnosis more difficult?
The process of self-diagnosis
Some people do not have access to a professional diagnosis. Some examples of barriers to diagnosis are:
Doctor/psychologist visits and hours spent evaluating can be a very expensive process, and not everyone has insurance or enough money to pay for this.
Some parts of the world do not have enough medical care available to people because there are not enough doctors for the population. Long waiting lists and overworked doctors may prevent someone from wanting to seek diagnosis. General doctors may not specialize in psychology, and feel under-prepared to properly screen for autism.
Many people have learned to mask their symptoms. There are many pressures from society to fit in, and autistics are often forced to learn to look “normal” - by parents or peers. Many who have learned to mask have a hard time relaxing and acting more naturally.
Some clinicians have very conservative screening standards and refuse to evaluate if a client/patient does not meet expected criteria for the screen (i.e. missing social cues, avoiding eye contact, “atypical” vocal patterns).
While professional diagnosis can be validating and provide a path to accessing resources and accommodations, some do not want a professional diagnosis at all. Usually the reason someone might avoid receiving a diagnosis is stigma. If a parent or other adult is responsible for and has access to the individual’s healthcare records, they may not trust that person to treat them well. They might be afraid of discrimination or disempowerment by healthcare providers, workplaces and the government (for adoption for instance). They may feel isolated if they receive the diagnosis. Others may not want it because they feel confident in their self-knowledge and want to avoid the expense. Parents may avoid getting their children diagnosed because they don’t want them separated into different classrooms in school, or may not have the money for healthcare.
A person seeking self-diagnosis may have an experience which gets them thinking about autism and recognizing themselves in that label and people associated with it. For example, the individual may have met someone autistic and related to them like no-one they had ever met before. Perhaps a caregiver anecdotally mentioned to them it was a possibility. Finding the diagnostic criteria for autism spectrum disorder is relatively easy online, and some start by reading about the criteria. Most people who self-diagnose spend a lot of time researching autism as well as other neurodivergences, reading writing by autistic authors about their experiences, taking tests online, etc. Some self-diagnosed autistic people may end up knowing as much, if not more, about their condition as most professionals.
Self-diagnosis also usually comes with a lot of self-doubt, “impostor syndrome” and changes of mind. Lack of recognition by healthcare professionals, lack of access to accommodations and benefits, and gate-keeping are all experiences frequently associated with self-diagnosis.
If your character is self-diagnosed, ask yourself :
Why isn’t your character professionally diagnosed? Do they wish to be one day? Have they tried to get a professional diagnosis without success? If so, how do they feel about it?
How confident is your character in their self-diagnosis? Did they do a lot of research? How did that make them feel? Do they have an accepting community, whether locally or online? Do they have to deal with others gate-keeping because they lack an official diagnosis?
Are there some accommodations, therapies or benefits your character needs but can’t obtain without diagnosis? How does it impact their life?
Diagnosis & Identity
Think about your character’s journey with diagnosis, and how it impacts their identity, how they feel about themselves and how they think of themselves.
At what age were they diagnosed?
Did they have an active role in the diagnostic process; did they seek it out? Did they accept it or resist it?
How did their diagnosis or lack thereof affect their education/work experience? Did they receive accommodations? Were they kept from doing certain things because others believed they couldn’t?
How did their diagnosis or lack thereof affect the development of coping skills?
How did they learn about autism? If diagnosed as a child, were they told about their diagnosis? In what terms? If not, how did they find out? How did it make them feel? What impact did this have on their choice to identify as autistic (another way to think about this was, were they in denial because of shame or some other reason, or did they rejoice in finally having an explanation for their experiences? Or something in between)? How did they react to their diagnosis or lack thereof?
Who, if anyone, are they comfortable telling? Did anyone find out who the character didn’t want to know? Did their parents tell someone, if applicable? Does anyone know about their diagnosis/identity, officially confirmed or otherwise?
Do they interact with other autistics - online or in person? Do they have autistic friends? Do they feel part of a community, autistic/neurodivergent or otherwise?
What makes them feel included or not? What makes them feel similar or dissimilar to other autistics, or to the stereotype of how autism is perceived by the public and/or their community?
Are there moments of doubt about their diagnosis?
If officially diagnosed, how long did that process take? Are they currently seeking diagnosis?
Does your character encounter stigma as a result of their diagnosis or lack thereof?
These questions can help you think about your character’s experience. Diagnosis is tricky business. I hope this provides some nuanced ideas on diagnosis of autism and autistic identity.
- Mods Cat, Snail, and Siena
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