It seems strange writing about Autism Spectrum Disorder because I often avoid engaging in conversations regarding the topic.
I do not hesitate to discuss any topic that is near and dear to me, except autism.
Why would this be for an outspoken woman who is passionate about issues that affect children? I do not discuss the topic because it causes my 19-year-old son great pain and discomfort when I do, because he does not want anyone to know he has a diagnosis of autism.
My firstborn son was diagnosed with Autism Spectrum Disorder at 16 years old. He was born 5½ weeks early, but he was always well above his developmental age cognitively. When he was 2 years old, he was reciting states and capitals and doing addition problems.
Our pediatrician in New York told us that his head was unusually large, but because he was so precocious, there was nothing to be concerned with.
When he was about 3 years old, I had to take him to the doctor because he was sick with a respiratory infection. Unfortunately, his normal pediatrician since birth was not in the office and we were set up to see another doctor.
I took my son in for a common cold and left with a diagnosis of possible hydrocephalus with an MRI scheduled for the next day.
At almost 3, my son still had a soft spot the size of a quarter; however, there was never a concern because he was always considered “precocious” by his regular pediatrician.
Signs of autism begin to emerge
I did not sleep or take my eyes off of my son until the results of the MRI came back.
The MRI found no abnormalities. My husband and I were angry at the doctor for scaring our family, and yet we were relieved that our baby was healthy.
As my son progressed intellectually, he also developed quirky habits and characteristics that were noted by many, including his regular pediatrician.
We could not dress him in anything with tags because he could not function with the feeling of the tags rubbing against his skin.
He was obsessed with trains, especially Thomas the Tank Engine. As a 3-year-old, he memorized every train name, and he could not go to sleep unless they were all lined up a specific way on his train table.
By the age of 5, he did not like anyone to really touch him except for me and would do whatever he could to politely move away from family members who would try to caress or hug him.
He wasn’t the type of child who would throw a tantrum, you could just look at him and see the pain in his eyes and his discomfort was palpable.
We were lucky he was such an angel, knowing what we know now about autism; however, it was because he was a well-behaved and brilliant little boy that he went without a proper diagnosis for so long.
Year after year, we would have his pediatricians tell us that he the characteristics of Asperger syndrome.
We were also told that until it had an impact on his functioning that he would not likely be diagnosed.
Of course, the first thing I did was read every research article, every book and anything I could get my hands on, trying to figure out what I could have done differently — and even more importantly, how could I work with him to help him have the most normal life he could have.
I knew he would be fine intellectually, but the older he got, the more I could see how he would be labeled if we did not intervene to help him appear “normal” socially.
Searching for a reason
In my years of looking for a solution and “why” my son was the way he was, I found that many parents have that same need.
As humans, we need a reason, or an answer, and something to blame when things do not go the way we feel they should.
I have read articles and blogs and watched talk-show interviews of people blaming vaccines and other environmental factors.
However, I could never find any conclusive empirical data or studies to support these claims.
What I did find in my research was a significant increase in Autism Spectrum Disorder and a continuous decrease in other mental disorders such as mild mental retardation or intellectual disabilities.
Until 1973 when the DSM changed the IQ cut-off point for intellectual disability, the DSM IQ cut-off point was 85.
The decrease in the cut-off point changed the diagnosis for a very large number of individuals.
The cut-off point changed because it was found that people with low IQ, but high adaptive functioning, could hold jobs and live a regular and successful life if they were able to go undetected during their school years.
Compulsory education and the change in academic expectations for all students had a significant impact on diagnosing intellectual disabilities, because even those with lower IQs would no longer be diagnosed as intellectually disabled.
If a person is no longer able to be considered intellectually disabled, but still cannot function socially because their adaptive functioning is low, then the next step is to seek another diagnosis to explain what would once have been considered “idiots, morons, and feeble-minded.”
This is where I believe caused the significant increase in the number of children diagnosed with Autism Spectrum Disorder, a disorder that went “officially” undiagnosed in my son until he was 16.
That year, he had an emotional breakdown because his adaptive functioning was a struggle every day of his life as he got older, and it was more apparent that he was “quirky” compared with other kids his age.
My son had to be placed under observation because he spoke of feeling hopeless and useless because he did not fit in. He looked like a jock but his mind was always thinking about chemistry and physics.
My son was ridiculed, almost daily, by people calling him “retard,” yet he was in Calculus III as a senior at the age of 17.
We worked with multiple doctors, including a psychologist who specialized in Autism Spectrum Disorder, when a psychiatrist diagnosed him as having Autism Spectrum Disorder, because his lack of adaptive functioning was impeding his ability to connect and relate to his peers and triggered depression and anxiety.
A diagnosis and a new perspective
As a parent, I wanted an answer for why my child had to deal with the struggles of autism. What I do know from all of my research is that autism can be linked to genetics.
Of course, no parent wants to think that their genes may have contributed a child having challenges in life. But placing blame on other factors that have no proven direct link, such as vaccines or other environmental factors, can cause harm to many children and adults.
In hindsight, the fear of a life-threatening diagnosis, such as hydrocephalus, may have been what helped to keep our perspective positive before and after the diagnosis of autism.
In the whole scheme of life, we are fortunate that today our son, who is 19 and in his second year of chemical engineering, is able to have a more specific diagnosis of Autism Spectrum Disorder rather than be labeled intellectually disabled because of his social difficulties and quirkiness.