Lack of a Sense of Participation
I feel like many procedures were happening to me, just like rain. I cannot participate in the rain, I can only accept the water droplets splashing on my skin.
For example, I didn’t understand the concept of a "bath" or "shower" before the age of 9. To maintain hygiene, my mom asked me to sit in a large basin filled with warm water; she would grab my arm, teaching me how to wash myself. If she only gave verbal prompts, I would just play with the water and end up having a meltdown caused by the water turning cold. Afterward, they would dry me with a towel and help me put on my clothes.
Before 14, I didn’t understand the concept of "washing hair." My mom had to ask me to lie down on two chairs pushed together so she could wash it for me. The only thing I could do was listen to prompts like "lie down" or "stand up."
I also had a hard time dressing myself before 12. When my mom asked me to get up, I just kept lying in bed. She had to grab my arms and put them into the sleeves, otherwise I'd just sit there spacing out. It always took at least 30 minutes to finish dressing because I lacked an awareness of cooperation and sometimes had meltdowns due to sensory overload.
I must clarify that my parents tried to build my sense of agency, but i just couldn’t develop it. I had little interest in activities except lining up objects or doing simple repetitive movements. I could not pay attention to others' actions, nor think about what their intentions were. I barely initiated any action spontaneously.
I think I have the aloof and passive subtypes of autism according to Lorna Wing’s classification (another subtype is "active but odd"). I am highly prompt-dependent. before I became an adult, I perhaps did nothing all day if nobody told me what to do. And when someone told me to do something simple, I would do it without thinking. It looks like the phenomenon called "automatic obedience."
More related information: I started showing some negative symptoms of schizophrenia as a toddler and developed catatonia-like symptoms during my childhood. I was diagnosed with mild to moderate autism and ADHD-PI. However, I don't think I have ADHD; instead, I believe I have a milder presentation similar to the cases in older studies during the period when autism was being distinguished from schizophrenia.
My symptoms have been alleviated since I started taking methylphenidate four years ago, and my life is much better now. I am just curious if anyone else has experienced a similar "lack of sense of participation" that requires significant support from others.