Dear Persons,
Here, as promised, is my rewriting of the most commonly used publicly available DSM-5 diagnostic criteria for autism.
It’s still clinical and doesn’t reflect what I personally would say about my neurology, never mind the brains and minds of the many, many Autistic people I’ve come to know. I myself would write a very different definition (we actually discuss this in our recent podcast).
And please note that I have issues with diagnosis, considering that autism is more properly an identity and way of human being than a “condition.”
I’ve spoken frankly about “medical” diagnosis and the diseaseification/pathologization of autism in many of my talks, especially in this keynote about developing better neurodiversity paradigms. And I’ve written about it at length here on my blog and here [click on “Free Resources and Downloads”] in the FREE online fourth section of our most recent #ActuallyAutisticBook, under “Working for systemic evolution, No. 1: Shift professional paradigms.”
But I know that a diagnosis is still needed in many educational, therapeutic, medical, and other gatekeeping contexts.
And it can give people really helpful tools and resources.
So I thought perhaps this primary aspect of most diagnostic processes could benefit from improvement!
It took a long time to update just this small amount of text because I had to do it in small doses. Kind of made me sick every time I would start. Traumatic.
Please don’t force yourself to read it if it feels potentially painful!
...Unless you are a professional, in which case, onward—please.
I usually write first and foremost for my Autistic brethren, but this one is especially directed toward professionals.
To be clear, this is a work in progress, a draft evolution of an inherently discriminatory and harmful system.
To that end, I have tried to eradicate words and phrases from the original text that were triggering, condescending, and discriminatory.
To offer just one relatively benign example, I might change the word “excessive”—which implies that the Autistic person is doing “too much” of something—to “intensive,“ which has the connotation that there’s a goodly amount of said activity, but doesn’t carry a negative judgement or labeling aspect.
I have included the general format and most of the original text, with updated language and descriptions of the differences we Autistic people share, as compared to neurotypical people, while attempting to erase the implicit and explicit negative connotations incorporated in the original text.
The word “spectrum”—which I myself incorporated into my blog title more than a decade ago—is increasingly seen as an imperfect representation of our diversity, but I am not sure “wheel” (a more nuanced vision of neurodivergent variations) works in this setting, so I have simply removed the former.
I do want to say that even this updated criteria list can still be disturbing and upsetting.
It’s really hard to be different in a world that does not always welcome, never mind celebrate, neurodivergence.
That’s one of the reasons I set myself this task: to shift one element of this challenging world—these brutal diagnostic criteria—into something more useful, truer, more affirming.
Idea: Could these standards be subbed in for what clinicians use now in order to more realistically and fairly diagnose this common and equally valid neurological way of human being?
Let me know what you think!!!
Autism DSM-5 diagnostic criteria:
A. Persistent differences as compared to neurotypical social communication and social interaction across multiple contexts, as manifested by all of the following, currently or by history (examples are illustrative, not exhaustive; see text):
• Differences in social-emotional reciprocity, ranging, for example, from unusual social approach and disinterest in typical back-and-forth conversation; to reduced or increased sharing of interests, emotions, or affect; to a lesser tendency to initiate or respond to social interactions.
• Differences in nonverbal communicative behaviors used for social interaction, ranging, for example, from less integrated verbal and nonverbal communication; to variations in eye contact and body language or alterations in understanding and use of gestures; to a lower propensity for facial expressions and nonverbal communication.
• Differences in developing, maintaining, and navigating relationships, ranging, for example, from challenges with adjusting behavior to suit various neurotypical social contexts; to difficulties in sharing standard neurotypical imaginative play or in making friends via standard neurotypical means; to a lower or higher level of interest in peers.
Specify current impact: Impact is based on social communication challenges and focused and/or repetitive patterns of behavior.
B. Focused patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
• Specific and/or repeated motor movements, use of objects, or speech (e.g., simple motor or vocal repetitions, lining up toys or flipping objects, idiosyncratic phrases).
• Insistence on sameness, adherence to routines, or ritualized patterns of verbal/nonverbal behavior (e.g., distress around changes, difficulties with transitions, entrenched thinking patterns, greeting rituals, need to take the same route or eat the same food every day).
• Highly focused interests that are extraordinary in intensity or specificity (e.g., strong attachment to or preoccupation with particular subjects or objects, very circumscribed or concentrated interest).
• Higher or lower reactivity to sensory input compared to neurotypical standards or strong interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, intensive smelling or touching of objects, visual fascination with lights or movement).
Specify current impact: Impact is based on social communication challenges and focused and/or repetitive patterns of behavior.
C. The above neurodivergence must be present in the early developmental period (but may not become fully manifest until neurotypical social demands increasingly misalign with neurodivergent capacities or may be masked by learned strategies in later life).
D. The above aspects of neurodivergence create significant impacts in social, occupational, or other important areas of current context.
E. These differences are not better explained by intellectual disability or global developmental delay. Intellectual disability and autism can co-occur; to make simultaneous diagnoses of autism and intellectual disability, social communication should vary from that expected for neurotypical developmental level.
Dear reader, thank you for taking this hard journey with me to reimagine these criteria, shifting from diagnosing a “problem” to describing a neurotype.
Please be well and take care of yourself. Know that you are worthy. You matter.
Little by little, we are together helping this world become more welcoming for all of us.
Thanks and love,
Full Spectrum Mama
