Is Self-Assessment Enough?
This article by Embrace Autism Is self-assessment enough? Is very interesting. It discusses some of the reasons people turn to self-assessment and some of the pros and cons.
“Five themes emerged when exploring the experience of realizing a self-diagnosis: feeling “othered,” managing self-doubt, a sense of belonging, understanding oneself, and questioning the need for a formal diagnosis.”
“Many autistic adults report facing significant barriers when seeking professional assessment, including high financial costs, long wait times, and a lack of knowledgeable clinicians.” Does anyone ever pay their four thousand dollars and then get told they’re not autistic? That could inform the issue of self diagnosis leading to misdiagnosis but only if we’re assuming the professional knows more than the autistic person.
To me there are a couple of issues here. On the one hand, as the article states autistic people can directly access their own internal states in a way that professionals cannot. Accurate formal diagnosis relies on the ability of the autistic person to effectively communicate their internal state to the professional but communication difficulties are part of the diagnostic criteria. On the other hand, the professional has much more knowledge about which criteria adds up to autism and not some other condition like ADHD, PTSD, social anxiety, etc. Without that knowledge, self diagnosis requires extensive research, personal reflection, interactions with the autism community, and taking multiple online self-assessment tests. It’s also possible to be or have all those conditions and more at the same time. 😫 “autistic individuals often develop a deep self-awareness of their neurotype, informed by lived experience rather than solely by clinical criteria.”
“Many self-identified autistic individuals find support in online autism communities, which often serve as safe spaces for discussing sensory sensitivities, social difficulties, and neurodivergent traits without judgment.” That’s certainly my biggest failure with this group as my intention was to create that safe space for autistic discussion but people don’t feel comfortable sharing and I don’t know why that is.
For either formal diagnosis or self diagnosis, what seems to be missing is after diagnosis support i.e. what does this new information mean for my pre and post diagnostic life? How do I update my understanding of myself based on this new information or as the article describes it “difficulties in restructuring self-identity.” “This period of emotional adjustment often leads to a re-evaluation of identity, relationships, and career paths.” Of course if you’re a senior it’s not so much re-evaluation as the grief of feeling that you don't have enough time left to be able to live your life as the you, you really are.
Anyway, those are just some of the ideas that jumped out at me. I recommend reading the entire article if you’re interested in this topic.
Here is another interesting article from Embrace called The Process of Realizing One is Autistic
I found it very interesting although I don't identify with most of it as I'm older than the people in the article and so wasn't even aware of autism for much of my life.
I really identified with this "That was the moment I discovered invalidation trauma—the deep psychological wound that forms when people deny your reality, when they tell you that what you know to be true about yourself isn’t real." For me this was medical professionals accusing me of giving them the silent treatment when I was actually too overwhelmed to speak or claiming the only reason I was in their office was so I didn't have to go to work. Very traumatic as those words would go on to echo in my head for decades. ARGH!