CW: ableist terms and language, mention of mental health.
The Diagnostic and Statistical Manual of Mental Disorders (the DSM) is published by the American Psychiatric Association (APA) and is used to classify cognitive differences. It covers many different neurotypes and mental health issues including schizophrenia, bi-polar, gender dysphoria, and autism. It is used across the USA and UK and anyone who has been formerly diagnosed with neurodivergence will have had their embodiment ticked off from it’s pages.
What does the DSM 5 say about autism?
“Persistent deficits in social communication and social interaction across multiple contexts….Restricted, repetitive patterns of behavior, interests, or activities”DSM 5 TR, 2022, pg. 50
The very first words used to describe autism explicitly frames Autistic people as socially deficient and behaviourally ‘abnormal’ (this word is sprinkled throughout the section on autism). The words disorder, deficit, inflexible, and difficulties are pathologising, suggesting that Autistic individuals are embodying humanity incorrectly. (I have made bold most of the problematic words to make it clear how often these words are used throughout the DSM).
There are two criteria for an autism diagnosis under the DSM 5 – persistent impairment in reciprocal social communication and social interaction, and restricted, repetitive patterns of behavior, interests, or activities. These come with the following sub criterion:
- Deficits in social-emotional reciprocity, ranging from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests; to failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction, ranging from poorly integrated communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures: to a total lack of facial expressions and nonverbal communication.
- Deficits in developing, maintaining, and understanding relationships, ranging, from difficulties adjusting behavior to suit various social contexts; to difficulties in making friends; to absence of interest in peers.
- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., lining up toys or flipping objects, echolalia, idiosyncratic phrases).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of behavior (e.g., extreme distress at small changes, difficulties
with transitions, rigid thinking patterns, need to eat same food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively restrictive or long-term interests).
- Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain, adverse response to specific stimuli, excessive smelling or touching of objects).
Symptoms must be present in early childhood and must cause clinically signification impairment in social, occupational, or other important areas of current functioning.
Once a person has received a diagnosis, based on the above, they will be given a ‘severity level’; 1 – requiring support, 2 – requiring substantial support, and 3 – requiring very substantial support (DSM 5 TR, 2022, pg. 52).
From my experience Autistic people experience differences in social communication and engagement, however looking at our interaction through a neuro-normative lens means that our embodiment is framed as wrong.
The problem with the DSM criterion is that they are seen as ‘symptoms’ – the physical manifestation of disorder, deficit and failure. Instead of the what they actually are, another way of being human (both infuriating and wonderful).
The use of ‘severity labels’ are not particularly useful especially they can not “be used to determine eligibility for provision and services [as the severity] may vary by context and fluctuate over time” (p. 51). If these levels are a snapshot of an Autistic person’s presentation at the time of diagnosis, and therefore does not help them in receiving support, it does make you wonder why they exist.
However, the DSM does at least acknowledge that some Autistic people do not show their Autistic selves “until social demands exceed limited capacities, or may be masked by learned strategies in later life” (p. 50). Which is an improvement on past editions.
There are some other good points made in the DSM:
“Adults who have developed compensation strategies for some social challenges still struggle in novel or unsupported situations and suffer from the effort and anxiety of consciously calculating what is socially intuitive for most individuals.”DSM 5 – TR, 2022, pg. 53
This sentence does not do justice to the burnout and poor mental health that many of us contend with, however, it is really important that this nod to Spoon Theory (see What’s Spoons Got to do with it?) exists within diagnostic manuals, as many of the ‘issues’ that we face are due to mistreatment from others, and the immense effort most of us put into masking and shielding (What is Autistic Shielding?). Importantly, the DSM reflects “adolescents and adults with autism spectrum disorder are prone to anxiety and depression.” (p. 55) although the distinction for why this could be is not made.
The DSM also appreciates some of the assumptions made around Autistic embodiment, such as Autistic people appearing aggressive or disruptive, with body language which seems wooden or over-exaggerated. Additionally, appreciating that ‘repetitive and restricted interests’ can be special interests which bring joy, as well as avenues for education and employment, is more nuanced than I was expecting.
The biggest improvement from the 4th edition to the 5th, in my humble opinion is that ‘Autism Spectrum Disorder’ supersedes embodiments previously referred to as early infantile autism, childhood autism, Kanner’s autism, high-functioning autism, atypical autism, pervasive developmental disorder not otherwise specified, childhood disintegrative disorder, and Asperger’s. Functioning labels are finally being understood as inaccurate and unhelpful, allowing for a better understanding of ‘the spectrum.’
So, is the DSM painting an accurate picture of Autistic experience?
My answer is mixed. The DSM 5 is affirming in places – reflecting on depression rates, special interests, and masking, which many of us experience, however it also continues to uphold pathologising language and systems of Autistic suffering. The DSM has come along way since its inception in 1952, but there is still a long way to go.
I have also written on the DSM and ADHD here