From “Severe and Low Functioning” to “Kind of a Big Deal”

Some people consider it so abhorrent to entertain the possibility of having a child with autism they are willing to do a sperm screening that allows doctors to selectively choose only sperm that will produce female children to impregnate the mother. Since there are currently four times as many autistic boys than autistic girls the thinking is that only allowing sperm that will result in girl babies at least reduces the risk of autism. Read the article Baby Sex Checks here. There are ever so many areas to address in this article and others have done so here , and here, but I will only address one area. What a child struggles with today is not necessarily indicative of who and what he will become once he is grown up. I will use myself as an example.

When I was a youngster there were many difficulties. I was actually institutionalized for some of my growing up years. As a young adult I continued to have difficulties in life. In fact, it took me longer to “grow up” than most of my peers. I was born in the 50’s and there was no such thing as autism awareness, supports, programs – nothing, zero, zilch. If I had been born today the terms applied to me would be severe and low functioning.

I was that autistic in the making that the sperm selection article is hoping to prevent. It wouldn’t have worked well in my case because I am female so they would have missed the sperm that made me since they are only booting out the male-making sperm at this point.

There is much research today in the field of autism focused on prenatal identification of autism. This would allow prospective parents the choice to abort an autistic baby. I am not here to argue for or against the idea in this blog. I am here to say I am glad I was allowed to live.

My life has not been easy, but it is my life. I would not want it snuffed out. From a once institutionalized child, characterized as severe and low functioning I grew up over time into the woman I am today. If you want to read my story it is in the book called Paper Words: Discovering and Living With My Autism, which won a 2010 International Book Award.

Fast-forwarding from childhood to fifty years later – today I am an accomplished woman professionally. I have two different publishing companies that have published a total of 10 publications in the field of autism since 2006. I am an international speaker on many autism related topics. I am a consultant to school districts and agencies on behalf of autistics, focusing on capacity building through staff training and coaching. I volunteer on state and national boards for autism organizations. I own and run my own business and know I am successful as evidenced by the fact that people keep hiring me and paying me. Many people tell me that I have helped them immensely.

I also have a full and meaningful personal life. My three grown children and their significant others bring me great joy. They are all happy and productive in their chosen fields of work, good citizens and wonderful people each in their own right. I have several good friends and more acquaintances than I know how to remember! I go out once a month with a group of friends. Last month I brought my newest, just out book Painted Words: Aspects of Autism Translated for my friends in this group. Jackie brought me a touching gift to express her sentiment – a package of napkins with a picture of an old-fashioned lady with the words “I’m kind of a big deal.”

My life is not always easy. I have to outsmart the day-to-day difficulties just like everybody else. Autism makes it extra challenging some days, but it also gives me an edge on some things. I appreciate that I had the opportunity to be born, to grow up and to become the me I am today.

So that is my story. From an institutionalized child who was severe and low functioning to 50 years later being “kind of a big deal.” I know people will say things like, “you are not like my child” and some may turn it into “inspirational porn,” but my story and my life are what they are regardless of what anyone says or does with the facts.

If you were my parents and the prenatal tests informed you that I had autism what would you do? If you could select sperm that made sure you did not have a male child in hopes of reducing your chance of having a child with autism would you do it? It isn’t here today, but one day you will very likely have the opportunity to decide.

For autistics growing up today and their parents please know that what you see in the every day life of child today does not necessarily predict what adult life will look like. I know many adult autistics who live full and meaningful lives with all varieties and flavors of autism in their bodies.