Category: Autism

This excerpt from research paper by Koyeli Sengupta, Srushti Gandhi and Alokananda Rudra on highlighting the importance of making autistic individuals aware of their diagnosis.

Self–advocacy is possible only when autistic individuals are aware of their diagnosis and cognizant of their strengths and differences (Shore, 2004). Knowledge about their diagnosis helps create an empowering positive autistic identity (Cooper et al., 2017, Oredipe et al., 2023) rather than fostering an image of a broken neurotypical (Almog et al., 2024). An increased understanding of one’s condition among autistic adults is associated with enhanced self-understanding, awareness, and self-compassion (Crompton et al., 2020, Leedham et al., 2020), with opportunities to belong to a community by connecting with other autistic individuals (Hickey et al., 2018, Tan, 2018)_.Studies also suggest that the earlier individuals know their diagnosis, the greater the association with a more positive disability identity (Corden et al., 2021) and sense of self (Oredipe et al., 2023, Smith et al., 2018), while later knowledge of diagnosis was associated with experiences of grief for the pre-diagnosis years when autistic individuals struggled and blamed themselves for the challenges. (Leedham et al., 2020)_.

Awais Aftab provides a succinct explanation of autism, as per DSM-5, and how its diagnosis is based on a descriptive prototype rather than medical tests.

To be diagnosed with autism spectrum disorder according to DSM-5, a person must have ongoing difficulties in social communication and interaction in all three areas: trouble with back-and-forth social connection, problems with nonverbal communication like eye contact and body language, and difficulty making or keeping friendships. They also must show at least two types of repetitive or restricted behaviors, such as repetitive movements or phrases, needing things to stay the same, having very intense focused interests, or being unusually sensitive (or under-sensitive) to things like sounds, textures, or lights. These patterns must have been present since early childhood (even if they weren’t noticed until later when life got more complicated), lead to substantial impairment in functioning, and can’t simply be explained by intellectual disability (or other psychiatric disorders).

To “have” autism is simply to demonstrate this cluster of characteristics at the requisite level of severity and pervasiveness. It doesn’t mean that the person has a specific type of brain attribute or a specific set of genes that differentiates them from non-autistics. No such internal essence exists for the notion as currently conceptualized.

Autism spectrum is wide enough to have very different prototypes within it. On one end we have profound autism, representing someone with severe autistic traits who is completely dependent on others for care and has substantial intellectual disability or very limited language ability. At the other end, we have successful nerdy individuals with autistic traits and superior intelligence, often seen in science or academia, à la Sheldon Cooper. (Holden Thorp, editor-in-chief of the Science journals and former UNC chancellor, for example, has publicly disclosed his own autism diagnosis.) This wide range is confusing enough on its own, even without considering other conditions that can present with autism-like features.

Autism cannot be identified via medical “tests.” It is identified via clinical information in the form of history, observation, and interaction, and the less information available or the more unreliable the information provided is, the more uncertain we’ll be. To have autism is basically a judgment call that one is a good match to a descriptive prototype. We can get this judgment wrong, and we sometimes do get it wrong. (There is nothing wrong with this fallibility as such, as long as we recognize it. Lives have been built on foundations less sturdy.)

Thsi comment by TexanFeller on Hacker News explaining monotropism with a metaphor.

I find monotropism an apt way of understanding it. A normal person’s attention is like a flashlight they control that illuminates much of a room at once. Autistic brains are a tight beam flashlight, almost a laser for some, with its aim difficult to change. ADHD brains are more like a tight beam flashlight on a motorized mount that swivels in all directions, but you’re not always in control of where it swivels to…it’s like an AI constantly overrides your direction inputs and points the light at what it deems most exciting or urgent at the moment.