What it’s like to have a child
on the autism spectrum?
We all know children on the autism spectrum are vastly different in many respects from children who are not.
Autistic children see their world through a different lens. And that’s the good news to embrace if you have a child with autism, even when their different lenses can cause disruption.
This is how autistic children communicate; they try to let you into their world so that you can witness its beauty and understand them. They see things you can’t and appreciate things you may take for granted. These different yet beautiful children have so much to offer. The onus is on the parents to raise their children on the spectrum with a life of compassion, paralleled with a life of 24/7 care.
“Finding beauty in something that oftentimes comes with so much stress and hardship can completely go over our heads, but let’s stop to think about this for a moment. Stopping in his tracks to notice frozen droplets glimmering on a leaf in the wintertime, or watching the wind rippling through a puddle, exclaiming that ‘it looks like waves in the ocean!’. Seeing ‘rainbows’ on bubbles or putting his face right next to mine because he’s staring at the reflection of the TV through the lenses of my glasses. Then there’s the look of sheer joy on his face when a strong gust of wind blows through the trees so they sway back and forth. I’m seeing the world through my child’s eyes and it’s beautiful to me,” writes Stephanie of Autism Journey about her autistic son and the joy of his beautiful lens.
Perhaps you’ve seen a child throw what looks like a “kid who is giving his parents a hard time”—most likely at the grocery store. The reality is, this beautiful autistic child isn’t giving his parents a hard time at all; he’s having a hard time and this is how he communicates it.
No two children are affected the same by autism. Each autism diagnosis is unique to that child, although there are similarities that make it an autism diagnosis instead of a different disorder. Many with autism have exceptional abilities, often in music, academic achievement or visual skills. Nearly 40% of those diagnosed with autism have above average intellectual abilities. This range is why it is called autism spectrum disorder.
While some on the autism spectrum thrive, many have significant disability and are not able to live on their own. Twenty-five percent of those diagnosed with autism are unable to communicate verbally but typically learn their own ways to communicate.
Things others often take for granted are processed differently by children on the spectrum. For example, crowds, loud noises, shouting or yelling, bright or blinking lights, are among a wide range of common triggers that more often than not, lead to extreme anxiety or even a total meltdown in an autistic child. A common example, and perhaps one you’ve witnessed, is when a child on the spectrum has a meltdown in public. The episode is magnified when others stare, give looks of disapproval or make unsettling comments.
How do parents of autistic children cope with the day-to-day?
Make no mistake, caring for an autistic child takes an infinite amount of patience, love, motivation, consistency and energy. When a parent of a child on the spectrum struggles to possess each of these, it’s time to consider respite care to help cope and remain on top of the parent game. After all, an autistic child is bound to pick up a parent’s stress, causing even more stress.
When parents seek a professional caregiver, they know there isn’t a one size fits all formula for caring for an autistic child. This literally means no two autistic children are cared for in the same way. Although a caregiver may have fundamental experience in caring for a child on the spectrum, that does not mean they understand their child’s unique needs, motivations and requirements. It’s up to the parents to discuss their child’s behavior and needs with the new caregiver and provide instructions on how to manage them.
Parents also need to make sure the caregiver possesses these three skills:
- The ability to communicate with your child and vice versa. You will need to teach them your style or strategy for communication.
- Understand the importance of the child’s routine since disrupting their it could mean volatile outbursts and escalated behavior. Children on the spectrum notice everything—every little detail, so it is easy to derail them if their routine has deviated.
- Heightened observation skills are an important part of caring for children with autism. They need to learn what is normal for your child and be on guard for behavior outside of the norm.
When hiring a caregiver, it’s critical to hire one who has these three fundamental skills that provide the parents with a foundation to build upon when teaching the caregiver how to care for their child.
Additionally, it’s important for the caregiver to reinforce the teachings the parents have been working on with their child. They should be able to pick up where the parents left off on the child’s lessons, communicate in the same manner as the parents, work on social skills and learn to teach rather than control.
Autistic children learn best without too many, too hard or too vague of instructions. They require clarity with exact and easy to understand instructions. Children on the spectrum often have rigid, fixed ideas and behavior which often interferes with their ability to take instructions, ergo whatever parents can do to make instructions easy and clear will ensure the best possible outcome. Parents can share their routine for giving instructions to the child with the caregiver for continuity of care.
Finding a caregiver who has the fundamental skills to care for a child on the spectrum is easier than one might think. You can find a compassionate caregiver with experience caring for children and people on the spectrum at your local SYNERGY HomeCare.