Delayed Diagnosis

A lot of the focus of the attention that autism gets is on autistic children. I have mixed feelings about this. Obviously, children of any sort are among the most vulnerable of society and, as such, deserve the best attention and care we can give them. Childhood is a time when autistics can often be friendless and trapped in a school system that seems designed to bully them and make them feel every bit the alienated outcast most autistics feel they are during that time. However, it is important to remember that autistics grow up. Many autistic adults around nowadays grew up in a time when autism was not well-understood, even by the medical and psychological community, and underdiagnosis was a serious problem. Therefore, many weren't diagnosed until adulthood, as was the case with me at 27. Experiencing autism in this way is, I believe, a unique experience and markedly different than the way modern kids diagnosed will experience it.

In some of my pre-diagnosis writings, you can read me making references to an unseen internal enemy holding me back or tripping me up in ways I could not understand or even name. That's what undiagnosed autism feels like for an adult. A whole lifetime of being accused of character defects has formed a pattern that makes you ask a lot of questions. My first day of preschool, I got two shiners from a girl who attacked me because I was, "weird," as she termed it, which set the tone for how my classmates would think of me, all through my life, I was in constant trouble for talking too much or about things no one cared about, which I could never seen to control and caused everyone to label me, "annoying," and physical problems like my inability to learn to ride a bicycle or operate a broom or mop were labeled as, "laziness," or, for the more unrefined, "being a giant pussy." Similar experiences for autistics diagnosed as adults all add up to a life trying to figure out what the hell our problem is.

An undiagnosed autistic adult didn't have therapy to develop coping mechanisms, specialized career training meant to help them adapt to a workplace, a solid understanding that their stubbornness is rooted in anxiety, knowledge of their type of autistic mind and the ability to use that knowledge to better adapt, or the support and understanding of family and friends who knew they could not help but succumb to their eccentricities. They have spent their entire lives being called a retard, weird, incompetent, lazy, argumentative, incorrigible, off, and to shut up. One autistic I know wasn't diagnosed until the age of 40 after three failed marriages, self-medicating with alcohol, and having the unknown and unknowable phantom destroy every last career he attempted. He and I now have a name for our pain but wow does it ever seem to have come too late. All we can ask neurotypicals is that they remember that, just because they can't see our disability, that doesn't mean it isn't there. So focus on the kids, yeah, but don't forget us. Don't forget to do better by them than was done for us.

-Frank