April is Autism awareness month, or I like to call it: Autism acceptance month.
At this point in life, almost everyone has at least heard of autism but no one really understand what comes with it until they have to live it. Our son Emory was diagnosed with Autism Spectrum Disorder in November of 2019 at 4 years old. Although we don’t personally go by levels, he is considered level III sever nonverbal autistic. I started bringing up my concern of autism to his pediatrician when he was 6 months old. I noticed he was fascinated with ceiling fans and would flap his hands whenever he was excited. (Hand flapping is a ‘red flag’ for autism). His pediatrician did what any good pediatrician would do any reassured me that it was fine and we would keep an eye on him. He was hitting on his milestones just fine. That was until he turned 18 months old. At that point, he completely stopped talking. At this point we were referred to speech therapy, which then referred us to Occupational therapy. Our occupational therapist brought up to us that she felt he needed to be evaluated for autism. Of course I contacted our pediatrician and she referred us to neurology as well as sent a referral to Marcus Autism center in Atlanta. We got into the neurologist right away, however, Marcus Autism Center had a 18 month minimum wait list. After being evaluated by the neurologist, she agreed that he COULD have autism but its hard to tell. At this point, Emory wasn’t talking, hand flapped, barely made eye contact and did not respond to his name. She didn’t feel confident enough to diagnosis him herself and suggested we wait for Marcus to evaluate him and suggested we see ENT to check for hearing impairment. Marcus autism center is the top autism center in the south east so we felt confident in waiting. In the process of waiting, we continued with speech therapy, occupational therapy, as well as enrolling him in a special education Pre-K to help further assist him to be the best Emory he could be. We took the recommendation and also had his hearing evaluated which he passed with flying colors.
Once we finally got an appointment at Marcus Autism Center, we sat through a 3.5 hour evaluation with a psychologist and a pediatric occupational therapist. The evaluation consisted of hundreds of questions for us from pregnancy to present time covering every single detail of Emory's life. The occupational therapist worked with Emory the entire time on things like picking colors, following simple one step commands, pretend play, sitting at a table, manners, ex.. most of which he couldn’t do. After the 3.5 hour evaluation we were informed of his official diagnosis. Even though my husband and I knew Emory had autism, hearing the official diagnosis hit us like a ton of bricks. Especially hearing he was considered severe. As parents you never want to hear something is wrong with your child. Especially when its something you can’t fix.
Since getting his Autism diagnosis, SO many doors have opened to help Emory be the best Emory he can be! Thankfully we have amazing insurance that covers every therapy that Emory needs. One being ABA therapy (Applied behavior analysis therapy). In the autism world, ABA therapy is a hot topic. 15+ years ago ABA was a form of abuse for autistic kids. Thankfully, it was drastically revamped and no longer abusive in any form! ABA has helped Emory learn to do the basic day to day functions a 6 year old should know how to do: Sit at a table, use a fork, get dressed, put on his shoes, respond to his name, socialize with peers, and so much more!
See, one of the many things that people are unaware of when it comes to autism is the struggle these kids/teens/adults go through daily. The basic daily functions we all take for granted, people with autism struggle with. They respond to everything around them differently so they are often looked at as weird. Almost every grocery store run we do, Emory gets stared at for his daily actions. He flaps his hands, we jumps up and down, and he yells often.
Although we are unsure of Emory's future and the thought of it scares us most days, we have learned to live day by day and be present. Having a child with autism has taught us a parents to not take the smallest things for granted. Emory has taught us more in like these past 6 years than we will ever be able to teach him.
Some signs of autism:
- Poor eye contact
- Compulsive behaviors
- Impulsivity
- Repetitive movements
- Speech delay
- Unaware of social ques
- Sensitivity to sounds
- Lining objects up
- Obsessing over lights or objects
We greatly appreciate this local parent for sharing her journey! Throughout this month, we will be sharing more stories from families and/or organizations. If you have a story or resource to share, please send me an email to Lacied@macaronikid.com.
