A Mom's Journey With Autism Spectrum Disorder, aka Asperger's Syndrome

Updated on June 24, 2017
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My daughter has autism spectrum disorder. Our family has become experts in the worlds of autism advocacy, special education, and insurance.

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Identifying and Living with Autism

Fifteen years ago, I would never have thought I would be sitting behind a computer typing an article with a deep personal connection. In 2001, my husband and I were due to have the most perfect baby girl. A bundle of joy, free of flaws of any kind. I was an educator, and I was committed to making sure she knew her 1,2,3's and A,B,C's. However, we were about to embark on a journey into unfamiliar terrain.

The Mayo Clinic defines autism spectrum disorder (ASD), formerly known as Asperger's syndrome as:

  • Autism spectrum disorder is a serious neurodevelopmental disorder that impairs a child's ability to communicate and interact with others. It also includes restricted repetitive behaviors, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning.
  • Autism spectrum disorder (ASD) is now defined by the American Psychiatric Association's Diagnosis and Statistical Manual of Mental Disorders (DSM-5) as a single disorder that includes disorders that were previously considered separate — autism, Asperger's syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified.
  • The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity. Although the term "Asperger's syndrome" is no longer in the DSM, some people still use the term, which is generally thought to be at the mild end of autism spectrum disorder.
  • The number of children diagnosed with autism spectrum disorder is rising. It's not clear whether this is due to better detection and reporting or a real increase in the number of cases, or both.
  • While there is no cure for autism spectrum disorder, intensive, early treatment can make a big difference in the lives of many children.

In a nutshell, this describes how a person with ASD views the world. A world that is black and white. A world without blurred lines because it is matter of fact. A world that I had to come to learn with my daughter.

Many times over the years, I wondered what it felt like deep inside for a child locked in the ASD world. As I wondered, I also explored every possible source to help my daughter. I knew deep down that any lack acceptance of her "God Given ASD/Asperger's Perfection" on my part would stop her from progressing. I had to prepare myself for all the appointments, insurance battles and learning her rights in this world who knew little of ASD/Asperger's. I knew then and I know now that as her mom I must be the first to look at the world through her eyes. As her mother, I owed it to accept her. If not, then I could not help her reach critical milestones. My lack of acceptance would prevent me from see the joyful moments of her unique ASD characteristics. I knew deep down that if I did not want to see "her" unique ASD characteristics the inevitable would happen. The inevitable would be a lack of acceptance and self-love within herself.

Each year, I learned more and more about ASD/Asperger's. Some information, I did not know, and some the world did not know. I see her as a millennial among ASD children because today's society is putting more and more emphasis on accommodating the needs of individuals with autism.

According to the Mayo Clinic, "Autism spectrum disorder impacts how a child perceives and socializes with others, causing problems in crucial areas of development — social interaction, communication and behavior." This mysterious disorder has characterized the little girl I birthed in 2001.

Over the years, she and I have both come to be resilient individuals. Through joy, tears and frustration. Through living and believing that all healing is possible, as stated in Isaiah 53:5. "But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed."

Over time, I have come to learn that her perfection was not my perfection. It was really God's perfection. She and so many like her have have stood in the "gap" so that the world better understands who they are. Her perfection began as was this wonderful thing called "Asperger's" in 2001. Like it or not, I had to fight back the tears and commit to accepting my beautiful baby girl.

Back then, Asperger's, aka autism spectrum disorder, was a mystery to all. She did not seem to be hitting the milestones, such as speaking and listening. I thought to myself, "Hey, I have one gifted daughter? Things will come in time, and she will be just like her sister." Little did I know, her timing was God's timing. I had to succumb to fighting the pediatrician for a speech referral when she was only fifteen months. I prayed my intuition would be wrong and I would be told by a speech pathologist, "You have a perfect little girl. Her words will come in time." That did not happen—and then I learned she had this mysterious illness called sensory integration disorder.

Over time, we saw the ASD symptoms listed by the Mayo Clinic in our beautiful bundle of perfection.

  • Doesn't respond with a smile or happy expression by 6 months
  • Doesn't mimic sounds or facial expressions by 9 months
  • Doesn't babble or coo by 12 months
  • Doesn't gesture — such as point or wave — by 14 months
  • Doesn't say single words by 16 months
  • Doesn't play "make-believe" or pretend by 18 months
  • Doesn't say two-word phrases by 24 months
  • Loses previously acquired language or social skills at any age

All of a sudden, I was shuttling my toddler to weekly speech and occupational therapy appointments. I worked full time as a mommy and teacher—and now I was taking on the role of advocating for a little girl who so needed so much. So much that I knew so little about. My husband and I could not stop to hurt because we had to "fix" our little girl. Time was ticking because early interventions were critical. By the way, we had two children. Our oldest daughter, who is now 23 years old, hung in there for the journey to help her little sister. It has made her the best sister a child with ASD could have.

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So what does that mean as we continue the journey?

First, we accept that two children with ASD will never appear alike. Hence, she is her own unique individual. As a family, it is imperative that we never stop looking at the world through her eyes. This aids us in better understanding all the mysterious social nuances of her world. We must make sure that she and others treat her for who she is so that her ultimate potential is maximized.

Adaptability is term that we have become more familiar with as she ages. Her ability to adapt to the world around her does not necessarily happen at the same rate as her peers. That is okay. We have learned to adapt to her pace and help her better use coping skills to make necessary adjustments.

We accept that as she matures there will be frustration, joy and tears just as when she was little. The intensity of the frustration, tears and joy will change based on her needs and understanding of the world around her. More importantly, we provide guidance to those who are charged to help her. Guidance as family advocates who will fight for her and listen to the experts. We continue to become experts in the worlds of special education, mental health and insurance. Never stopping to knock on doors to ensure she has the help needed as she progresses into adulthood. Teaching her that she is the most awesome individual who needs self-patience to take in the world around her. Making sure that doors are opened with the appropriate support.

Most importantly we have hope and spiritual faith. Hope and faith that requires we truly believe that all things will happen for her good through Christ. Knowing and believing that this journey is a test that is becoming the testimony for others. Trusting, that her purpose on this earth has a true reason and that she just may be leading us as the young girl led Naaman in 2 Kings 5:1-19. Knowing that through a peaceful spiritual our family will and must continue the ASD journey beside our daughter.

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      KimmieB 

      22 months ago

      Your faith, tireless effort to advocate, support, teach and continous learning are a shining example for all parents of children with Autism. Thanks for sharing!

    • profile image

      Cliff 

      23 months ago

      Thank you for sharing! As educators, this is insight we can all appreciate. The more I know, the better I'm prepared to help others. I'll look to hear more in the very near future.

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      LaDonna Jones 

      23 months ago

      Thanks for sharing your heartfelt story and spreading your first hand knowledge of ASD. Your baby girl is very blessed to have you as a mom. Hopefully this will reach many other families who are impacted by ASD.

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