A Way of Life Asperger’s Syndrome

In honor of World Autism Month, I have decided to write on behalf of my son, Devin Doyle Henderson who was diagnosed with Asperger’s Syndrome at a very early age, at just 18 months in 1991.

• In 2018 the CDC determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder (ASD).
• 1 in 37 boys
• 1 in 151 girls
• Boys are four times more likely to be diagnosed with autism than girls.
• Most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2. (Autism Speaks)

Did you know even well-known people may have Asperger’s, just to name a few:

• Albert Einstein, 1879-1955, German/American theoretical physicist
• Alexander Graham Bell, 1847-1922, Scottish/Canadian/American inventor of the telephone
• Benjamin Franklin,1706-1790, US politician/writer
• Emily Dickinson, 1830-1886, US poet
• George Washington, 1732-1799, US Politician
• Marilyn Monroe, 1926-1962, US actress
• Henry Ford, 1863-1947, US industrialist
• Isaac Newton, 1642-1727, English mathematician and physicist
• Ludwig van Beethoven, 1770-1827, German/Viennese composer
• Mark Twain, 1835-1910, US humorist
• Thomas Edison, 1847-1931, US inventor
• Thomas Jefferson, 1743-1826, US politician
• Vincent Van Gogh, 1853-1890, Dutch painter
• Alfred Hitchcock, 1899-1980, English/American film director
• Andy Kaufman, 1949-1984, US comedian, subject of the film Man on the Moon
• Andy Warhol, 1928-1987, US artist.
• Charles Schulz, 1922-2000, US cartoonist and creator of Peanuts and Charlie Brown
• Hans Asperger, 1906-1980, Austrian doctor after whom Asperger’s Syndrome is named
• Howard Hughes, 1905-1976, US billionaire
• Jim Henson, 1936-1990, creator of the Muppets, US puppeteer, writer, producer, director
• John Denver, 1943-1997, US musician
• Al Gore, 1948-, former US Vice President and presidential candidate
• Bill Gates, 1955-, A key player in the personal computer revolution.
• Bob Dylan, 1941-, US singer-songwriter
• Charles Dickinson, 1951, US Writer
• Keith Olbermann, 1959-, US Sportscaster
• Robin Williams, 1951-, US Actor

Although my son was diagnosed before the age of 2, he was labeled with what the neurologist termed his diagnosis as a pervasive developmental disorder (PDD). The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before three years of age. (ninds.nih.gov)

As a young mother of 29, I was not sure how to absorb this information. One minute my son was a happy little boy and what I thought doing all the right things as an 18-month-old should be, babbling, forming words, running, playing — until one day he just stopped talking as if he couldn’t hear us anymore. It was if the doctors did not want to use the word “autism.” Not sure why that was, but it was and still is my understanding that they wanted to do more testing on him to be entirely sure before they could label him on the autism spectrum. However, it was clear to me that day that my child was definitely at risk.

The doctor was extremely compassionate, and when he delivered the news to my husband and I, both of our faces went blank. We both were in a state of shock as we had so many questions. “How could this possibly be happening to us, and better yet to our sweet baby boy?” The doctor indicated to us, “There is no rhyme to reason as to why your son may be on the spectrum.” He then discouraged me in going on the internet to further research as he felt that would only muddy the waters for this new diagnosis that was bestowed upon my son as he was already arming us with plenty of reading materials. My head was spinning out of control, while my precious little boy was quietly playing with his favorite toy, Thomas the tank engine. He carried Thomas everywhere with him. What I learned is that those that are on the spectrum tend to form an obsession with certain toys and in this case, Devin did with trains.

What I also learned is people with Asperger’s find:

• Social situations to be awkward.
• Simple small talk about being difficult.
• Tend to focus on certain things for long periods where they lose track of time.
• The difficulty is coming up with imaginative storytelling and writing.
• Can pick up details and facts but have a hard time with organizational skills.
• When conversing with people sometimes find it hard to sort out what other people are thinking and feeling.
• Difficulty making friends.
• Often misunderstood by others as being rude even when that was not the intent.
• Unusually strong, narrow interests.
• Can be inflexible and resist change

Signs and Symptoms of Asperger Syndrome?

• It can be diagnosed as early as 18 months to 3 years. No known cause. It can change with each passing year.
• A form of autism that some signs are characterized by children who exhibit:

a)normal or above-normal intelligence,
b) social awkwardness,
c) Arrange their toys in a line,
d) Avoid eye contact,
e) Lack of empathy towards others,
f) Motor skills are somewhat clumsy,
g) May exhibit repetitive movements such as wringing their hands or twisting their fingers.

• People with Asperger’s have a hard time relating to other people.
• They typically have a particular obsession — trains, trucks, maps, numbers.

What does it feel like?

• • Hypersensitive to sounds:

Imagine chairs sliding on the floor, tapping of a pen on a hard surface, clicking of a pen, a lawn mower outside the window all coming at you at one time.

• • • Has a routine and feels lost if the routine is changed.
    • Hypersensitive to touch.
    • Hypersensitive to bright light.
    • Takes language literally:

–    When you tuck your child in a bed, you might say something like, “Don’t let the bed bugs bite!” They will literally think they will get bitten by bugs in their sleep.

• • • Thinks in pictures.

What causes it?

There are no known causes.  Researchers believe that often it is genetically passed down through a family member.

The National Institute of Neurological Disorders and Stroke (NINDS) are currently collecting and analyzing DNA samples from a large group of children with the disorder to identify genes and genetic interactions linked with the syndrome.

Of course, at the time when I heard the word “autism,” I immediately thought of “Rain Man.” I asked the doctor will my son ever function as a normal little boy. He then put both my husband and myself minds at ease as he said, “Again, I typically do not like to diagnosis this early, but I believe your son has high functioning “Asperger’s Syndrome.” WOW…I thought to myself when I heard that diagnosis spew out of his mouth. “What the heck does that mean?” Once again, he gave us reading materials and answered our questions the best he could that day, but it all seemed like a blur as tears began to roll down my cheeks. However, the answer that stuck out the most to me that day, as he said, “When your son reaches his early twenty’s you will probably never even know he ever experienced being on the spectrum with the proper treatment and care, and I am going to help you get him on the right path.” I wondered secretly in my own heart that day if my beautiful baby boy would ever grow up to become a productive, functioning member of society, and at the same time, I felt so guilty for thinking those thoughts as his mother.

I knew that day moving forward I would become his biggest cheerleader, and I did just that. I did what any loving mother would do. I researched and made all the necessary doctor appointments. From that day moving forward, I fought hard as a mother and enrolled him in every possible program that was offered to him: early childhood, speech therapy, psychologists, sociologists. You name it; I left no stone unturned. I also joined a group for mothers and fathers dealing with children on the spectrum. I can even remember my mother calling Sacramento to speak to the Governor’s office, to help get some necessary public-school aid for our son that he was being denied. Now, anyone that knew my mother, you did not want to get in her way!

I realized that although I had great doctors and therapists along the way that helped guide us and did the best they could to advise us. However, what I realized along the way; it was my job as his mother to be his advocate because we live in a world that does not make it easy for children with disabilities. It seems like with each year your child grows living with autism there is always something different that is thrown into the mix. It is our job as parents to figure it out and help them along the way. If you are so lucky to notice signs as early as I did, it is essential to get your child tested early. I used to worry that I wasn’t doing enough. I clearly couldn’t do everything for him. Treatment plans are available for people with Asperger’s, and the level of intelligence may vary.

Once again, early diagnosis is critical! Although there is no known cure for Asperger’s, there are appropriate treatment plans for Asperger’s that you can coordinate with therapies for their communication skills and social skills. My son had many different therapists along the way. I can tell you it is imperative to their treatment plan that you find a therapist that specializes with those individuals on the spectrum. Devin had one in particular therapist that touched him in a way that he will be forever grateful as will I. She is an angel. Devin’s therapist was a Ph.D. and specialized with individuals on the spectrum. She was just fantastic with Devin. There were times when Devin did not want to go to his dreaded sessions, but in the end, he was so thankful for all of the doctor’s advice as he realizes that due to her counseling it has taught him positive reinforcement. Thank you, Joy!

Therapy also helps with the parents in ways to manage Asperger’s to assist your child in dealing with social skills as well as understanding how to teach positive reinforcement. I just couldn’t bare the mean kids at school picking on him. It just broke my heart when he struggled at school with making friends and kids would tease him for no good reason, and therefore, the other children would reject him. When he did finally make a friend, I was beyond thrilled.

Some people don’t realize how amazing autistic people can be. I am not as familiar with the other spectrum disorders as I am with Asperger’s. Asperger syndrome, or Asperger’s, is a previously used diagnosis on the autism spectrum. In 2013, it became part of one umbrella diagnosis of autism spectrum disorder (ASD) in the Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5).

Typical to strong verbal language skills and intellectual ability distinguish Asperger syndrome from other forms of autism. (Autism Speaks)

What I can tell you is that with Asperger’s, some may develop a savant. Savant skills are not universally present in all Asperger’s persons, although they are very common, and generally, include fantastic memory. When they do occur, those special abilities in Asperger’s tend to involve numbers, mathematics, mechanical and three-dimensional skills. My son did not acquire the numbers, mathematics, but what he did develop was the ability to focus on computers and video editing. He is now a video editor. He graduated with his Bachelor of Science in Digital Film & Production where he honed in on video editing. He leads a very normal life, and I go back to what that neurologist told me all those years ago, that you will not even know he has Asperger’s when he is an adult. I am not sure if that is because as a mother I advocated and was his number one cheerleader and got all the necessary help for him and he was not just another statistic that fell through the cracks. He now looks me and everyone else he is talking to in the eyes. He speaks with enthusiasm in his voice, and through the years he has come to understand compassion and genuine empathy for others.

I once read a book quite a few years ago, titled, “Look into my Eyes” by, John Elder Robinson. I found the book to be quite interesting. While reading this book, I viewed his point of view through a different lens than that of what a new parent of a young child being diagnosed with autism. When I read the book, Devin was a teenager. This book was written by a gentleman who was not diagnosed up until he was forty years of age. His mother had schizophrenia, and his father was an alcoholic, so he did not have a cheerleader guiding him through the good bad and the ugly. He, unfortunately, was viewed as a deviant throughout his high school years as he was so misunderstood. I feel blessed to have gotten a very early diagnosis and was able to get the necessary help for my son at such an early age because he did not have to endure so much of the pain that this man did. This book gave me a bit of perspective. I did read some of the reviews on this book, and most were good and some not so good. For those that trashed the book, I felt that they were coming from a place where their children were relatively young and still grappling with trying to understand why their child has been labeled on the spectrum. What I can tell you after reading this book when my son was a teen, there were parts that I connected with, and that was understanding their way of thinking.

For example, what stood out for me in this book and to this day remains to be quite profound. Asperger minds are different and unique, but I believe in a good way. He described a time when he was a little boy, and his mother had some friends over, and they were talking about an awful event where someone was killed on the town’s train tracks. John was playing on the floor with his trains, and he looked up and smiled. His mother scolded him for smiling and immediately sent him to his room without asking him any questions. He was confused as to why she yelled at him because in his mind he was just happy that his mom and her friends were not the ones that were in that accident and they were all Okay! So, my take away from that was don’t be so quick to judge someone by their facial expressions as you never know what might be going through their minds. As for me, I try to be more sensitive as I know my son has a beautiful mind. He is empathetic and loves with all his heart!

Citations:

“Autism Facts and Figures.” Autism Speaks, www.autismspeaks.org/autism-facts-and-figures.

“Pervasive Developmental Disorders Information Page.” National Institute of Neurological Disorders and Stroke, U.S. Department of Health and Human Services, www.ninds.nih.gov/Disorders/All-Disorders/Pervasive-Developmental-Disorders-Information-Page.