I’ve been calling myself an orphan for at least a decade now. Here is how I began.
February 11, 2011. [Note: some of my language has evolved, so don’t shoot the messenger. This was before DSM5.]
I’m tired of being an Orphan. Although officially I became one on Christmas morning of 2001 on the death of my father, I owned the label long before that. First I was orphaned by the human family because I didn’t understand my neurological differences. I was orphaned by the school system, that lumped me in with the bright children even though physically I was a klutz [dyspraxic] and socially I was inept.
Later when I suspected I had Asperger’s I was told there were few to diagnose me as an adult. People with classic (Kanner’s) autism are easy to identify; those with HFA and Asperger’s can slip through the cracks. I fell below the radar.
Even after my dogged efforts to be diagnosed succeeded, I discovered adults with AS don’t qualify for resources and disability funds, as their conditions are neurological rather than mental or physical. Boys under 18 are the focus of most research, funding, and portrayal in the media. Girls need different testing to be identified ir, with their chameleon-like ways, they’ll remain invisible.
Women born before 1975 are less likely to be identified as aspies, as the first articles on AS (Lorna Wing and Uta Frith) only appeared in 1981. With the inclusion of AS in the DSM-IV in 1994, a new generation of girls has been located and through their diagnosis, some mothers have also found help.
So I’m a literal orphan, a societal orphan, and now a Research Orphan twice over: because I didn’t have a child in the 1990s when I was married; and because I am female and present differently.
ADDENDUM: Apoorva Mandavilli later published her exposé,”The Lost Girls,” in October, 2015 for which she won several awards. Has anything really improved? Now there’s a Twitter debate on what to call us old timers. Even within the autistic community we are orphaned due to #Ageism. We chose the name #AutisticElders for ourselves, but not everyone is happy or deserves to be called an elder. Just being old doesn’t make you a leader, some say. I just don’t want my younger spectrum sisters to go through what I did. Stumbling through life blind to the reality of my beautiful brain was hard.
Respect your elders, I was taught. But there isn’t a lot of respect yet for us, the #AutisticDinosaurs (which is what the new term Gerontautism makes me sound like). #WeHaveAlwaysBeenHere and I am #StillAutistic. Change comes slowly but it does come.