“I feel like I’ve lost my childhood to my disability.” I’ve read this haunting sentence multiple times on social media. I’ve also heard it from the mouths of disabled people in real life. So many of us relate to the feeling of never having experienced a normal childhood. Some have spent the majority of their formative years at hospitals or otherwise receiving medical care. Some could never participate in traditional activities such as sleepovers or playing sports due to being disabled. But how does the feeling of losing a childhood manifest in those of us who received their diagnosis as adults or teenagers?
According to the National Institute of Mental Health (NIMH), Autism Spectrum Disorder (ASD) is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. I didn’t experience the pain–or luxury–of knowing the exact reason why everything was so difficult for me until I received my autism diagnosis in my late teens. That doesn’t mean I wasn’t painfully aware of how different I was from others and how I was never dealt the same cards as my peers. Missing social cues and misunderstanding social situations is a key part of my experience with autism. I, however, always sensed how differently I was viewed by my peers and adults. I experienced the traditional bullying–partly because of my love of mathematics that I refused to shut up about, ticking another autism stereotype box. I was referred to as special, quirky, exceptional, or gifted by adults. Sometimes these were meant as a term of endearment, but more times than not there was a mocking undertone: “This child is not how she should be. There is something off about this child that I can’t quite pinpoint–but I’ll gladly make her feel bad because of it.” My parents, although two very lovely people, were never able to give me the support I so greatly needed.
That is the biggest wound from being undiagnosed for so long: Never being fully supported or feeling seen.
The concept of passing as allistic or abled is one that I’ve struggled with greatly. The most serious of my struggles went mostly unnoticed, but when they didn’t, they weren’t viewed as traits of a disability. In more distressing situations, the adjectives used to describe me were ‘’weird’’ and ‘’dramatic,’’ as well as the r-slur a few times. Although I never faced emotional or physical violence because of my carefully concealed autism, certain things stick around. I still can’t cry over being overstimulated in front of others, even those closest to me. I say a silent prayer every time I stim around other people: God, don’t let them notice. And if they do, don’t let them understand what stimming is. Once I realized what masking was, unmasking became a troubling goal. I often feel like everything bad that has ever happened to me was caused by not knowing how to mask my autistic traits properly. So, why would I willingly put myself in danger again by not masking? Being overly cautious doesn’t always feel nice, but I want to protect myself because I finally know how to do so.
l still don’t know whether or not I wish I was diagnosed earlier. Amid struggles and grief, I’ve come to realize how much privilege a late diagnosis holds. If I had been diagnosed as a toddler or a young child, I would’ve had to live with the stigma of being autistic for all of my life.
In an ableist society, people view and treat autistics very differently. Autistic children are often not in control of who is given their personal information and will most likely suffer because of that. As a young adult, I’m in control of who knows and when they will know. I have the tools to demand fair treatment and not accept ableism. Maybe I would’ve felt more supported or understood with a diagnosis, but would it have been worth it? Did not knowing about my disability protect me from it to a certain degree?
Accepting one’s diagnosis comes in waves.
Coming to terms with the fact that I am, have always been, and will always be autistic has been a long road. I don’t think I’ll ever reach the final destination. Some days I’ll gladly educate others on autism and thank the universe for giving me a brain like the one I have. Other days, I can’t help but cry over how much I wish I could have it easier, even half-hoping that there will be a ‘’cure’’ one day.
Spoiler alert, there won’t.
Somehow I still made it to where I am today. I am independent, creative and ambitious, and I quite like myself on most days. I’m capable of upkeeping meaningful relationships and being a decent student. If my inner child still exists, they have most definitely started to heal.
