The reason that I wrote “Autism What to Know and What Comes Next” is because so many people fail to understand what autism is. Every time I tell someone my son has autism, they say, “Oh, I’m sorry to hear that.” But I’m not even a bit sorry. Here is our story.
Updated from Original Publication in January 2017
Autism What to Know and What Comes Next
I was completely unaware of the vast world of services, support, and challenges unique to autism until 2013. Our son’s diagnosis came six weeks before his third birthday, so his entire educational path has the nuances of an Autism Spectrum Disorder (ASD) diagnosis. We’re lucky because my son received early intervention and continues to receive educational services. However, we’re not alone- boys are nearly four times more likely to be diagnosed with ASD.
The official government statistics, from the Centers for Disease Control and Prevention (CDC), cite one in 59 American children receive an ASD diagnosis (source). However, a recent survey published in 2015 claims that the actual statistic is closer to one out of 45 children between the ages of 3 to 17 (source).
Back when I originally published this, the statistic was that one in 68 children have autism. As the odds continue to rise, I can almost guarantee that someone you love is affected by ASD. Autism occurs across all racial and ethnic groups.
As a result, the diagnosis of autism spectrum disorder strikes close to home for a growing number of parents, siblings, friends, and family. This number is multiplying faster than the delegation of resources and public education about autism.
This means that the educational system isn’t always sure what to do with our children, and some medical providers are not well versed in our options for therapy and care. The statistics are staggering, and yet the diagnosis of autism is an enigma to most of the population that does not understand the impact of Autism Spectrum Disorder
How did you know your son was autistic?
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Our son was a beautiful baby. He never slept well, but he was my first child. I attributed the lack of sleep to healthy newborn life. As he grew, he hit each milestone slightly behind his peers. Late enough that I would spend nights awake googling, but not so profound that any professional intervened.
He developed a social smile around six months but used it sparingly. He didn’t routinely answer to his name unless I shouted or repeated it many times.
By eighteen months, he only spoke about fifteen words. Things were looking up until just before his second birthday. Almost overnight, he went down to only saying “mama”, “go”, and “no”. Until his fifth birthday, he did not add any more language to his repertoire.
I hired an American Sign Language (ASL) tutor and he added a few signs to his arsenal. He was able to sign “milk”, “all done”, and “more,” but even with the help of ASL, we struggled.
When you’re dealing with something as huge as concern over your child being nonverbal, everything seems overwhelming. Finding an in person professional may be too much stress. If it is, we found some amazing tools that were really helpful in our journey. My favorite was this e-book that taught us how to use signs for kiddos who have limited or no language.
However, his pediatrician told me it was normal and that he would probably catch up. He gave me a speech therapy referral- and we went to speech twice a week from 18 months on.
Because of his frustration with his lack of communication, he would scream and throw temper tantrums. He would sometimes run off his aggression around the house in a maneuver that I quickly labeled “the angry lap.”
He would bite his shirt or knock on his head when he was overstimulated. While sometimes unfocused and unaware of his strength, he has never been violent or unkind. He’s always been a gleeful, expressive, and loving boy. Society seems to portray autistic boys as savage and apathetic, but I will never understand why.
There was a specific incident that made me realize that he was different from other children. It still stands out in my mind. He was a few months shy of his third birthday. After nap time, I heard him quietly playing in his room. I walked into his room to scoop him up from wipe the sleep away from his eyes.
When I entered, I stood in shock. My son carefully lined up every single toy that he owned in a perfect line across the floor of his room. We’re not talking about a couple of blocks, or some action heroes lined up to battle. Every toy that my son owned stood shoulder to shoulder in a precise 15-foot line across his room.
I’ll never forget the look of pride on his face, but I burst into tears, because at that moment, I knew.
What are the symptoms of autism?
Autism is a spectrum, and no two children with ASD are alike, just like no two children are the same. While these are a collection of possible symptoms, it doesn’t include every last sign (source). Children with ASD often have social and communication issues- 40% of children with autism are nonverbal. They usually have unique behaviors or sensory concerns.
- Does not answer to name by 1-year-old
- Prefers solitary play or does not understand personal space
- Avoids direct eye contact
- Avoids physical contact or does not seek comfort from others
- Struggles to understand other’s feelings
- Inappropriate facial expressions
- Delayed speech
- Echolalia (repetitive words)
- Improper pronoun (Says “I” instead of “you”)
- Answers questions with unrelated responses
- Does not point or respond to pointing
- Rarely gestures
- Talks in a flat or sing-song voice
- Does not engage in pretend play
- Unable to understand joking or sarcasm
- Lines up objects or prefers organization
- Fixates on one part of object or toy
- Gets upset with changes in routine
- Has obsessive interests
- Flaps hands, rocks body, or spins in circles
- Attention span
- Aggression, temper tantrums, self-injury
- Unusual eating or sleeping
- Inappropriate emotional reactions or fear
- Unexpected reactions to sensory input (sight, sound, smell, taste, feel)
If any of these symptoms seem familiar, I encourage you to discuss it with your pediatrician. If your pediatrician doesn’t listen, take the M-CHAT online. It’s a developmental screening tool for toddlers (16 to 30 months).
How did he get diagnosed with Autism Spectrum Disorder?
We contacted our local Help Me Grow. They are not available in each state, but that website will lead you to the twenty-three states that provide similar services. Help Me Grow only works with children until they are three years old.
Because he was six weeks away from his third birthday, we had to work quickly. He instantly started his in-home evaluation with a variety of specialists. They recommended services for in-home programming and set us up with a service coordinator and service provider.
Finally, they referred us to a local Developmental Pediatrician who was able to get us in before his third birthday. The pediatric specialist collected questionnaires from parents and teachers and brought him in for an intensive testing session. The diagnostic test is called the Autism Diagnostic Observation Schedule (ADOS).
Once the data collection was complete, they called us back for an appointment. The specialist walked in with a stack full of papers, and a serious look on his face. On that day, our son received the diagnosis of autism, and everything changed.
We drove away that day with no idea where to start. We hurried to set up an Individualized Education Program (IEP), where we met with the principal, psychologist, Help Me Grow coordinator, teachers, and therapists. His school district placed him in a joint special needs and mainstream preschool program at the start of his birthday.
Our Son’s Autism Journey
The past few years have been a blur. Yet, that diagnosis seems so long ago. Our son is nine-years-old and thriving in the third grade. He has a best friend in school, two Applied Behavioral Analysis (ABA) providers that help him excel, and three little brothers and a sister who look up to him tremendously. He participates in the Special Olympics in the community and clubs for kids with special needs and their peers at school.
Our son has adapted in so many ways. We found that a weighted blanket, when he will actually keep it on him, is life-changing- particularly a blanket for children with weight divisions like this. He loved the “What Should Danny Do?” series that teaches about a super hero in-training about making choices that it impacts his outcome.
And like Danny, parents of autistic kiddos have a choice too. If something doesn’t work, I promise you there are another fifteen hundred options for you to choose.
We have lucked into some helpful resources but also muddled through until we got it right. There have been many wonderful moments over the years: cheering as he first threw a ball, watching him read without being taught, and zipping around our cul-de-sac on his Radio Flyer scooter.
However, the absolute best moment for me came in the car on the way home from school. I was driving in the minivan, with him sitting in his car seat in the back row. He quietly whispered to me, “Mommy, I love you.” I stopped the car and sobbed. My heart has never been the same.
While picking him up from Sunday school, a Dad looked over and said: “Don’t you wish they would just be quiet sometimes?” My honest response is, and will always be, “Never.”
How has life been since the autism diagnosis?
He has made me genuinely appreciate each milestone because each achievement is truly outstanding. Furthermore, the brother and sister that came after him benefit from our celebration of the little things.
I love my son and wouldn’t change a single thing about him or his diagnosis. Until the world changes, I will fiercely fight to advocate for a better world that understands and supports autism.
This blog is a labor of love to provide resources for families like us who adore their children and want to have the freedom to travel with them. Our family enjoys traveling, but I quickly became frustrated. It was so difficult to find information about autism-friendly locations, travel issues, and sensory considerations until we created this blog focusing on autism and family travel.
Please leave your experience in the comments.