First, the views on this blog and related pages are my own and do not necessarily reflect the views of any entity I work or volunteer for.
I am a female born in the early 1980s.
It was discovered soon after my birth that I had heart defects and I had to be on the “heart lung machine” as an infant, according to my family.
When I was growing up, it was obvious to my close family that I was “special needs” in some way, but I was never diagnosed with a developmental disability because, although I didn’t walk or talk until age 2, after that I became very verbal and excelled and basic schoolwork, especially reading and writing, so I didn’t fit the criteria for Downs or other known cognitive disabilities. I was behind in many non-academic areas, particularly social skills and daily-life problem-solving skills – basically, most things that are not formally taught. I also seemed to be very limited in muscle tone and overall physical performance, although we thought these things were probably connected with the heart condition.
In my family, A’s were normal and college was inevitable, for the “typical” people. Because there was no label available, I was in the mainstream education system, and was expected to achieve like anyone without a disability. Everywhere I looked, I read or heard that I had, not just the ability, but the obligation, to overcome anything that seemed to be an obstacle.
Even when I knew on some level I couldn’t do something – like in gym class, where we were graded on how fast we could run a mile and I knew I couldn’t run – I got a lot of grief about how I should be trying harder, and it never occurred to me to advocate for the right to an accommodation because I had a disability. I could never really be certain it wasn’t just a matter of not being in good enough shape. In hindsight, though, I can see that in many ways, teachers and other school professionals did accommodate me like a special-needs child.
My family’s discovery that I had Aspergers was serendipitous. A professor from a college we were considering (and eventually chose) asked my mother about me, and my mother (reluctantly) shared some of the concerning traits she had observed. This professor turned out to have a special education minor, and she said, “That sounds like Aspergers.”
I had read a bit about the traits associated with autism, and had even remarked that some of them sounded like me. But in the 1990s, it was thought that people with autism were less verbal and that they presented more like people with other cognitive disabilities such as Downs. Once we knew to research Asperger’s, however, it became apparent that the label fit me. I was formally diagnosed later that fall, after other college faculty let us know that they were concerned about behaviors they observed.
Ironically, Asperger’s was later abolished as a diagnosis. Now everyone who would have been diagnosed with Asperger’s or autism back then is simply labeled with Autism Spectrum Disorder. I cannot say if this does a disservice to everyone on that spectrum, but I hope it will not lead to others like myself falling through the cracks. Certainly, I am aware of being different from many adults I know with classic autism, in my verbal communication and performance in what might categorized as “academic” matters.
You hear a lot about people with autism using mostly pictures, but one famous expert says there are three ways for a person with autism to think. And for me, communication is all about words. Being read to, and later reading, was a part of life growing up (although I had different reading preferences from my family.) The written word has always been my expressive outlet, but it is difficult to stay focused on long projects, such as novels. Growing up and in college, I wrote a lot of poems and essays.
After a few years of listening to country music in the 1990s, writing song lyrics began to come naturally to me. I would love to think this means I am creative, but I think it is more honest to say that brain automatically imitated what it heard on the radio – the speech patterns, the rhythm and flow, and the rhymes.
I have been a finalist and a semi-finalist in this contest (Link now added.)
I now have a B.A. in Creative Writing and an additional, higher-level professional degree, and have been published in several journals, magazines, and newspapers.
For many people with disabilities, the reason for advocating for themselves, or telling their story, is to get people looking past the disability to what they can do. But I often have the opposite problem: Even after I started disclosing my diagnosis, people – professors, potential employers, professional contacts – tended, and still do tend, to expect me to work and otherwise function like someone who isn’t on the Spectrum or impaired in any way. This is confusing – people on the Spectrum have difficulty making judgments about what is realistic, or what might or might not happen as a result of their actions, and having other people’s assumptions that we can do it burned into our brain only adds to the confusion.
With this blog and site, I hope to explore and educate you about this, and other aspects of my experience living with Asperger’s/autism, but also reading with it – how it affects my reading and processing of books and other media, and which media I enjoy. Here is one of my first posts dealing with how I read and write.
Something about Asperger’s and autism you may not hear a lot about is a different level of endurance and the struggle to fit into our time everything that a typical person would. In that vein, I will not be posting new material as often as some bloggers do. It will be more like every other week, or two or three times a month, versus every week or every day.
I have also devoted another page to a list of autism and Asperger’s resources.
readingwithaspergers (at) Hotmail dot com
Twitter – @nwoh_writer