How It All Began For Me

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My personal journey with undiagnosed autism actually began not quite 54 years ago. I was born very early one rainy morning, according to Mom. She had suffered hard labor pains for many hours. My childbirth was so traumatic that she vividly remembers the labor and delivery even today. "That was before they had C-Sections, "she said. Almost all in this account is based on what Mom has shared with me.

My mom was sixteen when I was conceived nine months earlier. She had hoped that a pregnancy would cement the bond between her and her eighteen-year-old boyfriend. My bio dad. Instead, when he learned that his girlfriend was expecting, he reacted! Trying, I guess, to perform a “natural abortion” on Mom, he had kicked her in the abdominal area. Mom remembers her pregnancy with me as “just awful.” She had to stay with the parents of my bio dad, and she was not happy staying there. Because of the family situation at her own home, her Mom, my late grandmother, did not let Mom stay there to prepare for me or to give birth. “I just hid,” Mom says. Far more stigma was attached to teen pregnancy than is the case today.

I cried nonstop as a baby. “It was not normal infant crying,” Mom says. So how could even the label of colic explain it? She tried to nurse but says, “It did not agree with you.” She has little recall of the kind of infant I was behaviorally. Both my walking and my speech were delayed. Past records acknowledged my speech delay but blamed it on Mom’s “overprotective parenting” and stated that I showed a “capacity to talk.” I had to walk with twisters and Mom took me to a local children’s hospital, which treated children from low-income families, regardless of a family’s ability to pay. I was diagnosed with “mild cerebral palsy.” This affects me this day in my feet and legs. I have dealt with bunions since even early adulthood. As a toddler, I experienced my first seizure, and was diagnosed with epilepsy. Other than these things, little about my first four years can be remembered. As Mom was only seventeen and just trying to survive, she no doubt was not looking for any of those infant traits that are linked to autism today.

At age five, Mom enrolled me in kindergarten. It was a disaster! The teacher counted me as an “impossible child” because I could not follow instructions and no doubt, did not interact with the other children. When Mom came to pick me up when the time was up, the teacher told her, “You have the worst-behaved child I ever saw.” Both she and I responded to this by crying. This is the first time that Mom remembers any behavioral issues or differences. She regrets beginning me in kindergarten then. “Some kids are just not ready, she says. This is the time when the autism traits in many children begin to show up or intensify. At that time, Mom took me to a to a professional at the children’s hospital, I received a psychological screening and I was diagnosed with “obsessive-compulsive neurosis.” MY records state that Mom was concerned with my “distance in human relationships.” These misdiagnoses point to the existence of undiagnosed autism, with my obsessions and my dislike of social interaction. Yet the diagnosis of autism spectrum disorders (ASDs) did not exist back in the 1960s.

Mom enrolled me in a special class setting. It was a class for children with “emotion problems. I detested the “emotionally-disturbed” educational label that I was to carry for the rest of my school career. It made me sound like a freak or a dangerous person, not someone that you wanted to have around! Yet with nothing else to explain my differences and with no diagnostic tools that made any sense, the labels I wore growing up had to do. Mom also attributes my differences, which she calls my “problems,” to my brain not getting enough oxygen at birth, and in my very early childhood, to her accidentally dropping me where my head scraped the pavement. I have a pronounced bump on my hairline, over the top of my right shoulder. No professional whom I have shown this bump to can offer any explanation.

I can remember only bits and pieces of my very early childhood. Just like Mom. Yet like all the rest of my years, what I remember and what I have been told, have left me with enough questions to lead me on an energetic pursuit for this explanation since my daughter was diagnosed with an ASD many years later. Yet thanks be to God that due to professional confirmation of the presence of an ASD in my past and present, I finally have an explanation. I praise God and I thank my beautiful, precious daughter, without whom this would not have happened.

Autism Today & Yesterday

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When you think of the word autism, what picture comes to your mind? Chances are, unless you belong to the autism community, you probably visualize someone who is like “the rain man” who starred in the famous Dustin Hoffman movie. Many of you who are aware of autism think of autism and picture a children. Nonverbal or verbal, but still a child. Understandable. What frame of reference do you have to understand autism when the picture you are given in the media, when given, is that if autistic children who appeared only in the past two decades?

Let me give you some idea of my own experience with this. My knowledge that autism is a spectrum condition happened only when our own beautiful, precious daughter, was diagnosed with Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS), before age three. That was over eleven years ago, and Hannah is fourteen years old. Her diagnosis soon caused me to “self-diagnose” with an autism spectrum disorder (ASD), based on my lifetime of developmental issues that were clearly outside the norms. Growing up, I endured being misdiagnosed with labels such as “obsessive-compulsive neurosis,” and in school, educators slapped me with labels such as “emotionally disturbed” and behaviorally disordered.” I detested these labels! They made it look like I was the problem, that I was crazy, and that all my problems were my fault and in my head!

I spent years having to settle for an ASD self-diagnosis. I did not have the finances to use the services of the few professionals in my area who are said to be qualified to screen and diagnose adults with any ASD. Also, my family was not enthusiastic with me wanting to get checked out for this. They argued, “You’re too old to get services anyway. What good would it do you to know if you’re autistic or not? I could tell you that! If you get that label, people will not respect you. People fear those with labels. That is the way this world is.” As if I needed to know how the world treats those with differences or labels! It was disheartening to me to watch my family instill in my daughter the idea that her ASD was something shameful, to be kept secret, and to talk about only in hushed tones. Oh, I know that they have meant very well and only long to protect Hannah from being discriminated against, bullied and rejected! Their fears have continued though Hannah has always been mainstreamed, well-behaved, and made good grades in school. They fear that openness about her ASD would “ruin it all.” Worst of all, they have told me, “If you yourself ever get an ASD diagnosis, you need to keep it secret from her or she’ll lose respect for you.” Sigh.

Without much family support, I continued to contact professionals in the hope that I would locate a qualified professional who accepted my insurance. In time, my family reluctantly came around to accepting that I was not going to let this matter go; they saw that I was powerfully motivated to get answers as to what could explain many of my problems. Though I was aware of this autism center, at a teaching hospital two hours each way from my area, I did not consider it, as it meant much driving each way, to get there. But in time, when I saw that they were the only ones who accepted my insurance and had a doctor who screened adults for ASD’s, I was able to persuade my family to reluctantly support me in accessing an official autism diagnosis by these means. in 2012, an appointment was scheduled almost for nine months in advance, on October 29, 2013. Relying on results of an eight-hour cognitive test taken on January 3, 2013, the autism specialist used that, the interview on that date of the appointment, comprehensive blood-work, and a later February 4, 2014, interview with my mom about me, to finally give me the diagnosis of a Pervasive Development Disorder. Relief.

But this is by no means the end of anything. It is just the beginning. My family, unfortunately, have let society’s ignorance and stigmas about labels and differences influence their attitude toward not only Hannah but toward me. Stay in the closet, we are both told. But doing so will not only keep the stigma going but will perpetrate that idea that autism is just a children’s issue. If it is a “disease” that has sprung up only in the past couple of decades, what explains adults like myself who are able to confirm that this very same condition has explained our own lives and long before autism was recognized as a spectrum?

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