Autism Awareness: Living on Both Ends of the Spectrum

On average, Autism affects 1 in every 68 children, and 1 in 42 boys, according to Autism Speaks. It is one of the fastest-growing developmental disorders in the United States, and can cost families upward of $60,000 per year. And currently there is no cure or medical detection for Autism.  

As part of National Autism Awareness Month, we talked with Cassidi Jobe, a local mom whose two sons are both on the Autism Spectrum. Cassidi is a community advocate and owner of We Rock The Spectrum Kids Gym – KC.

How has autism affected you (and your family)? 

Both of my boys (Parker, 12, and Preston, 10) are on the Autism Spectrum, so we eat, sleep and breath Autism! Parker is severely impacted, and Preston is considered “high functioning.” I joke that we live our lives on both ends of the spectrum. Parker is nonverbal and requires a tremendous amount of support and assistance with day-to-day tasks. Preston primarily struggles with academics and social skills. It is hard to totally articulate how our lives are impacted because Autism is our lives. The daily therapies, school meetings, special diets and doctors’ appointments are our normal, so I don’t really have a comparison. I guess in one to two words, I would say: engrossing or totally consumed.

What are some of the symptoms of Autism or red flags that parents should be aware of?

No two children on the spectrum are the same, and the symptoms that each individual will display can look very different from person to person. However, some of the big red flags to look for in the early years are lack of eye contact, lack of nonverbal communication (pointing, gesturing, etc.) and lack of language development. Also, repetitive movements (flapping hands, rocking back and forth, pacing) and restricted interests. Children’s Mercy Hospital has a list of signs and symptoms on its website. It is important to note that a regression of communication skills at any age is something that needs to be brought to the attention of a medical provider immediately.  

What advice do you have for parents that have a child who was recently diagnosed with Autism?

First and foremost, I would say find your support system. The early intervention stage can be one of the hardest and most stressful stages of raising a child on the spectrum. It is important to have people in your life who you can talk to. And not necessarily people who understand because unless your social circle is already filled with people who have children on the spectrum, it will be hard to find those who totally get what you are going through. You will need people who are willing to let you just talk, vent your frustrations, express your fears and not try to fix the problem. Also, as impossible as it may seem, MAKE TIME FOR YOURSELF. Autism is a marathon, not a sprint — and it is imperative to not exhaust yourself.

What local resources are available to support parents and caregivers?

Kansas City families are very fortunate because we have a strong and supportive Autism community.

  • Children’s Mercy Hospital has list of early intervention resources.
  • Organizations such as Autism Society of the Heartland offer monthly support groups, parent workshops and a lending library that provides parents the opportunity to access a wide selection of literature about Autism. 
  • There are also online support groups. The Kansas City Autism Spot has more than a thousand members who are parents, caregivers or service providers of those with Autism. This group is a supportive platform where parents can ask questions, vent, share their stories and read the experiences of others who are sharing in journey of raising a child who is on the Autism Spectrum.
  • Some other local resources include:
    • All About Autism, an online resource that provides Kansas City families access to all local resources at the click of a button.
    • Autism Works offers social skills classes and sibling support programs. 
    • And for those looking for a play environment that understands and accepts those with Autism, We Rock The Spectrum Kids Gym is Kansas City’s only fully inclusive sensory gym offering open play seven days per week and adaptive kids classes like music therapy and kids yoga! 

What can parents of neuro-typical kids do to help support moms and teach their kids to support kids with autism?

The current prevalence rate is 1 in 68 children. These are huge numbers and illustrate the likelihood that you and your children are to interact with a family impacted by Autism. When this happens, your child is likely to have questions. Autism has no physical features, so the questions will likely be related to the behavior that an individual with Autism displays. There are a few key things you can do to help your child understand their peers who are on the Spectrum. First, educate yourself! That way when your child asks you questions, you can embrace their line of questioning. Second, set a good example! Different can be scary for children, but when they see you embrace those with developmental differences, this is not only reassuring and comforting to them, but they are also much more likely to do the same.

Here are some examples of conversations that might arise:

  • Child: Mom what is Autism?
  • Mother: A word that doctors use to describe the way that some children’s mind and bodies work.

  • Child: Why does she jump up and down and wave her hands like that?
  • Mother: Because that is what her body does when she is excited.

  • Child: Why doesn’t he listen and follow the rules?
  • Mother: He isn’t misbehaving, his mind is still trying to learn the rules. He just needs a little more time.

Important note: Behaviors associated with Autism are most commonly attributed to a child “misbehaving” (because there does not appear to be anything physically wrong with the child and these behaviors can be very upsetting to a neuro-typical child). It is important to understand that Autism is not a condition that can be fixed with discipline. Children with Autism struggle with learning, which impacts their ability to listen and follow routines at the same rate as their peers. They also have sensory systems that process environmental stimuli differently than others, so lights may be brighter, sounds may be louder and smells may be stronger. As a result, the child’s mind is busy processing this environmental stimuli and isn’t as readily available to take in new information, let alone process it and act upon it.

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