The problem is, the accounts that produce much of this content is created mostly by people (or bots/AI) without any kind of healthcare training or experience. Even fewer of these account holder have any kind of meaningful expertise in assessment and diagnosis of autism or other neurodevelopmental disorders; even though they claim to have credentials, experience, or even claim that they have been "diagnosed" with autism themselves. These claims serve to create an illusion of credibility, and for people consuming this material, a strong sense of identification with the content is enough to spark a powerful sense of being misunderstood and misdiagnosed - leading to a long, stressful, expensive and ultimately unfulfilling quest for a diagnosis and validation of their beliefs.
Let's break down problem with most autism content on the web:
1. Most social media account holders lack a basic understanding of actual diagnostic criteria for ASD.
ASD is a debilitating neurodevelopmental disorder comprised of two main clusters of symptoms: Deficits in social communication and restricted interests/repetitive behaviors (RRBs). While many developmentally normal adults have experiences that superficially resemble these symptoms, they are nearly always mischaracterized and misconstrued. For example, someone on a quest for an ASD diagnosis might give examples of social communication deficits as social awkwardness, trouble making friends, romantic difficulties, or even just feeling "different" from everyone else. The problem is that these experiences are incredibly common in developmentally typical adults, and are not a sign of autism. For example, among children with autism, a social communication deficit means that the child has trouble even comprehending the idea of what a social relationship is or how to communicate on an even basic level. Children with ASD often do not respond to their name being called, or are unable to engage in very basic nonverbal communication such as pointing. Additionally, people on a quest for an autism diagnosis provide examples of RRBs as being interested in things like Power Rangers for a period of time, then Scuba diving for a period of time, and then ancient Egypt for a period of time (to name just a few). The RRBs in autism however are often fairly atypical and include topics like tornados or elevators or cell phones (not playing games on the phone, talking on the phone, or scrolling on the phone; the actual physical phone itself), and are so exclusive as to prevent any meaningful engagement with most other materials. In other instances, people may mistake a life's passion for a restricted interest. For example, a professional musician mistaking their love for music as a restricted interest. The difference between a passion and a restricted interest is usually that a passion is fulfilling, and gives life meaning; while a restricted interest is truly a disability, holds the person back, and keeps them from doing things to promote their independence. In short, there is a large difference between the deficits in social communication and RRBs experience by people with autism and the fairly ubiquitous symptoms reported by developmentally healthy adults.
2. Social media accounts generating ASD content do not pay attention to the issue of impairment.
For something to be considered a disorder or impairment, it necessarily has to produce significant problems in some aspect of social, educational, or occupational functioning. Indeed, among people with ASD, only about 10% are able to live independently, and only about 14% are able to hold any kind of job for pay; even after receiving interventions like Applied Behavior Analysis (ABA). This is because ASD is a debilitating neurodevelopmental disorder, and though many adults experience things that superficially resemble ASD like social anxiety, relationship trouble, anger, and rigidity, in the vast majority of cases these to not produce the impairment that we typically see in ASD, for example requiring a guardian or being able to work only in a sheltered work setting. Many social media accounts will claim that they had to try *extra* hard in school to get by, or go to great lengths to fit in - however, the impairment associated with autism does not depend on how hard a person tries. This reasoning is harmful and offensive as it reduces the impairment associated with the condition to a matter of choice and effort.
3. Social media accounts are designed to attract followers, generate likes, and generate comments - not provide healthcare.
People that manage social media accounts producing content about ASD produce material that is designed to generate traffic on their account. Social media influencers are paid based on the number of follows, likes, and comments they produce. While many accounts go to great lengths to establish credibility by claiming to have an ASD diagnosis or by claiming dubious credentials, ultimately social media accounts are designed to do one thing only: make money. The more likes, follows, and comments that are generated, the more money that account holder makes. It is important to know that social media feeds are carefully chosen for every individual person based on their demographics and search history. If you encounter a multitude of social media posts about autism or other neurodevelopmental disorders, understand that that material has been carefully chosen for you by algorithms that predict that you will interact with it.
4. The best people to provide information about diagnosis and recommendations are members of your healthcare team.
It is important to get information about any health condition you are concerned about from the people who have studied, trained, bled, and persevered for years and sometimes decades to learn as much as possible about the condition under assessment. When people seek their healthcare information from people who are either unqualified or underqualified to assess their individual and unique personal situation, often the wrong diagnosis is assigned. Please receive your healthcare information from sources that are actually designed to provide healthcare. This would include doctoral members of your healthcare team including PhDs, PsyDs, MDs, and DOs. Healthcare information coming from other sources that are designed to attract followers, likes, and comments, probably do not exist for the promotion of health and wellness.
Providers at STLCCH are skilled in providing evidence-based assessments designed to diagnose correctly - not generate likes and followers.