Autism Ruined My Life

    I wanted to write a book bout autism almost from the moment I was diagnosed as an adult. I read books and researched the subject, collected notes, while working on an angle and a title. I looked at the history and medical research on the subject etc. but I couldn't get a handle on the tone. Then one day while bemoaning my fate I thought to myself, autism ruined my life. That's it, that's the title for the book.

    Steve Silberman, author of Neurotribes, which I highly recommend, noted that until recently the discussion of adults with autism has been done behind their back. That's also the theme of this manifesto. It's time to confront this subject head on, now that there is growing awareness that many missed an early diagnosis--especially females--because of faulty or limited understanding of the condition.

    This is not a tale about the hard but ultimately full life I've lived, how I overcame my disability to succeed because that didn't happen. Not all autistics are clever geniuses like Rain Man or Mr. Robot but in fact struggle to live each day dealing with the overwhelming demand from society to behave and just act, you know, normal.

You are going to get an earful and an education about that struggle. It will be enlightening, infuriating with bits of humor thrown in for good measure.

 

Autism Ruined My Life

 

    Because of autism I could never function normally in a world that prefers same rather than different. A world where one makes friends, excels at school, grows up to find a job, fall in love, get along with a family. For autistics, much of this is difficult or unattainable. If the condition is caught early enough, intervention and education can help ease the way but for those diagnosed later in life it's too late.

    I was diagnosed at fifty. Fifty years of rejection, loneliness and failure to keep a job let alone find a vocation (cue the violins). Even now my life isn't much better, but I can see more clearly why I screw up unintentionally and it's still a pain in the ass to deal with daily life. Thanks autism, really. Let's get on with the story.

    I was born a poor black child in a log cabin--no wait. I was born in 1960 during the height of a mini epidemic of measles, mumps and rubella which Mom had while pregnant with me. I was born blind in one eye and nerve deafness in the one ear. At the time anyone with physical birth defects was often deemed retarded as well. ( I know that's now a dirty word but that's what they called us so deal with it).

    As a child I vaguely responded to people and had some odd quirks. I spoke my own language until preschool then switched instantly to English at four years old. Mother noted my insistence on feeding myself and neatly arranging toys in the crib. As a toddler I liked running around with no clothes on. When I was told to keep them on I would wait til I was out of eye sight and remove them. According to an observant neighbor who reported to my amused mother, I would neatly fold them in a pile. A habit I still have, the neat nik part not the running around nude.

    Cute stories, but I only recall one conversation with mom when I was 19 ( Ironically the year researcher Lorna Wing published data on a paper written by Psychologist Hans Asperber about child patients with autistic like behavior ). Anyway, mom insisted "You were autistic as a child but outgrew it." I doubted then it was something one outgrew. What actually happened was I learned to mask the symptoms and mimic people as girls tend to do. Unlike the boys who throw parents into panic because little Bobby is not talking and spends hours staring off into space but little Betty is no problem, she is quiet and virtually invisible.

    When I informed my siblings of my diagnosis they were not the least bit surprised. "Oh mom talked about you being autistic all the time." My older sister dismissed. Really? No one ever mentioned it to me.

 

I will be posting periodic essays to get feedback on what works and what is relevant to the subject Please comment on your own experience and what you like, negative criticism will be ignored.