What is Autism?

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Autism is one of those things that most people have heard of, but they might not know a lot about it. Or the only reference they have for it is something like the movie, Rainman, which it doesn’t accurately reflect the overall population of people with autism. Every person with autism may have similar traits, but they are also so incredibly different. I’m going to share a little of our story, as well as an overview of autism. This can be helpful for parents navigating these same waters, for Teachers, for Service Providers, and for entire schools that have Special Needs students. When it comes to other humans, the more we can understand them, the better we can support them.

I have two autistic sons, Greyson is 11 and Parker is 9. When Greyson was 18 months old, my husband and I realized something subtle was going on with him. I couldn’t put words to it and I certainly didn’t think it was called something, but I just knew he was different from other babies that were his same age.  He didn’t call me Momma or even speak really. He is my first, so I didn’t really know what to expect. There were times I wondered if he loved me. He didn’t notice when I left or entered the room. He didn’t cry when I left the house. He didn’t run to the door and greet me when I came home. Then I thought something was wrong with his hearing. I would call his name over and over again- sometimes inches from his face and he didn’t even flinch. However, wherever he was in our house- if he heard the chime our TV made when we turned it on- he ran to the TV, so I knew he could hear. He no longer drove his trucks around the room- he now just stared at them from the side in fascination. He used to look at me like that, I thought longingly. I had no idea at the time, but these were all possible signs of autism. I never thought autism because he laughed and cuddled and didn’t spin or rock. I thought those things meant he wasn’t autistic. I was wrong.

What is autism? Autism s referred to as a neurological disorder or a developmental disability. It is also called an Autism Spectrum Disorder- ASD.  Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. Some autistic people need constant support, while some can live independently. No two people with autism are the same. Autism currently affects 1/54 children in the US. Boys are 5 times more likely to be diagnosed; causes for difference in gender are still speculative.

There is no medical detection for autism, no blood test, no brain scan. Just questions asked, usually by a Child Psychologist, and small little boxes penciled in standardized assessments. The earliest signs of autism involve the absence of typical behaviors—not always the presence of abnormal ones—so they can be tough to spot because every child develops at their own pace. I’m going to attempt to make something very confusing and slightly subjective into something a little more concrete- in bite sized chunks.

To be given a diagnosis of autism a child must have three core clinical deficits  1. Challenges in communication 2. Difficulty with social skills and 3.They also must have rigid or repetitive behaviors that fall into line with an autism spectrum disorder.  Let’s break those further down.

COMMUNICATION: A child should begin using first words between 12- 15 months of age. They are usually words meaningful to the child. Drink. Mom. Up (with arms raised to be held). By 18 months of age Greyson had a vocabulary of about 20 words- most of them were not spontaneous, but if we said it first- he could repeat it. He did not say Momma or Dada with intent- only in random babble. He did not say more or up or drink- he could only label nouns we had repeatedly reviewed with him from flash cards, toys or books. Truck. Bird. Boat. Duck. He never labeled the items when he saw them in natural settings. Look! There’s a truck! If I pointed to an object, he did not follow my point.

Communication is also non-verbal. Waving, pointing, arms raised to be held, are potential forms of communication that may be missing in children with autism. A lack of these skills at well baby check ups are all red flags that should be discussed at your pediatrician’s office. I brought these language concerns up at his 18-month well baby visit and I was told not to worry- the words would come. “Boys often talk later”, myself and so many others have been told. A delay in communication alone does not warrant an autism diagnosis, so further investigation is important. Early intervention is imperative, because studies show that early treatment improves outcomes dramatically. It’s important to voice your concerns to get any necessary Early Intervention from your state, which usually ends at age 3. I think it’s funny that the very organization that stresses the importance of early intervention often has months long waiting lists and weeks long paper trails required to begin services. Voice your concerns, request further evaluations if your gut tells you something is off, and make an appointment with your State Regional Center for people with disabilities for a screening if you believe your child needs one. You can self refer if you and your pediatrician don’t see eye to eye. (We self referred).  If by the time your appointment comes and you no longer have concerns, simply cancel your appointment.

SOCIAL: I remember feeding a baby Greyson- our eyes locked on one another. For both Greyson and Parker, somewhere between 15 months and 18 months of age the eye contact became less frequent. I would be inches away from their face attempting to get attention and they would look right through me.

Children with autism may not notice when you enter the room or come home from being out.

Children with autism tend to stay by themselves in social settings. If everyone is playing on the playground- they might be the ones running the opposite way. Typical children are curious about other children. They watch and imitate, they attempt to join in and play- or they are shy yet still curious. Greyson and Parker were usually fine being around other kids, but they didn’t initiate any interactions. They weren’t curious about the other kids. From a young age children like to show things to their parents. Maybe they want to share the excitement of a toy- so they hand it to you so you can exclaim- “this is wonderful!” Some bring an object to the parent for help opening. My boys didn’t do that. Impairment in social functioning is a central feature of ASD. Typical social skill deficits include: initiating interactions, responding to the initiations of others, maintaining eye contact, sharing enjoyment, reading the non-verbal cues of others (including facial expressions), and taking another person’s perspective

BEHAVIOR: Many children with autism have an insistence on same that goes beyond typical toddler opinion. Greyson could not have his hot dog cut up, he would ONLY eat it whole. I could not break a cookie in two and give him half. If he saw this happen, he would scream and and cry so loud, it sounded like he was hurt, and he  wolud then refuse to eat it no matter how hungry he was. Greyson used to like to go to the park by the same route, he would scream if we attempted to walk a different way.

There were numerous meltdowns over the seemingly to us- slightest things- all day long. The insistence for same and inability to communicate made Greyson extremely frustrated and sad.

Children with autism often have trouble transitioning into a new situations when leaving preferred activities. This can cause epic sweating, screaming, falling to the ground tantrums.

Many children with autism don’t play with toys in the same way as typical children. When referring to children who are not autistic we don’t call them “normal” or “regular” in comparison. We call them “typical” which stands for “typically developing”. Now I know even typical children develop differently – but they usually fall into a standard of brackets.

Some children with autism frequently lack pretend play skills. Greyson would prefer to examine the details on a car and line the cars up than to drive them around and make them go vroom.

This ASD behavior is called visual stimming- Turning head sideways to look at objects, frequently squinting, looking at things extremely close up, from numerous different angles or out of the corner of their eye. My youngest son Parker has incredible play skills- and is one of the most creative people I know, so not all items on an autism checklist applies to all children with autism.

Many kids have fixed interests that can be intense in nature. I often see this as a strength- they can be very focused on their passions, and learn everything there is to know about it. Oftentimes these passions can be used to teach other skills- counting Lightning McQueens when teaching 1:1 correspondence was much more fun that using tiny cubes for Greyson.

Many people with autism are highly sensitive to sensory stimulation. Noises, smells, food textures and lights can be overwhelming. On the plus side- they can have an ability to see things in the world with a clarity and intensity that typical folks don’t have the ability to. My boys have a very unique ability to visualize the world.

If a parent has any concerns about their child’s development, I urge them to complete the MCHAT- The Modified Checklist for Autism in Toddlers. It’s is a screener that will ask a series of questions about a child’s behavior. It’s intended for toddlers between 16 and 30 months of age. The results will let you know if a further evaluation may be needed.

There are ways people with autism are the same as everyone else. They want to be understood and accepted for who they are. Living with my boys has made me realize that we are all more the same than different, and sometimes the only thing standing in the way of acceptance, is a little understanding.

Chrissy Kelly
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