Changing How Autism Speaks
Have you ever heard of a silent disability? They are the disabilities that real people of all ages struggle with every single day. They are disabilities that you may never realize someone has because you can’t see them on the outside. One of the most common silent disabilities that are now talked about is autism.
Have you ever walked down a grocery store aisle and seen a child having a meltdown? Was your first reaction to judge the parent? I bet your first thought wasn’t “I wonder if that child is having a meltdown due to having a silent disability”. For local resident Kasie Castleberry, it wasn’t her first thought either. Not until her youngest son Camden was diagnosed with Autism the day after his second birthday.
After Camden’s diagnosis, Kasie admitted that she and her husband had very different ways of coping. “My husband is a coach at Northwest High School and he’s always been really involved with the kids,” Kasie said. “Because my husband works at the school, he had been around kids with autism. He had a different perspective. He got to see what it was like for children with autism in high school.”
For Kasie, the process of coping with her youngest child’s diagnosis was going through a moment of grief. “I grieved for our family and the changes we would experience. My husband had the mentality of ‘Okay. We know the problem. Now how do we fix it?’” Kasie explained.
For Kasie, the early signs of autism weren’t very clear. “I honestly just thought he was a lazy baby. He was the youngest. He didn’t have to do a lot for himself. I thought that he was just slower because everyone was doing everything for him,” Kasie said. It was actually Camden’s pediatrician that noticed he was showing signs of being on the spectrum. Kasie and her husband went through the process of ECI (Early Childhood Intervention). ECI ended up coming out to their house once a week to work with Camden, however, it still left Kassie feeling like she was grasping at straws.
They ended up seeking out a developmental pediatrician whom they spent 3 different appointments with him to have Camden properly diagnosed. “The doctor told us during the diagnosis process that there was a lot of information on autism out there and to be careful because there was a ton of scams and misinformation. He cautioned us to not get caught in a rabbit hole and end up somewhere we shouldn’t be,” Kasie explained.
It was then that the doctor directed them to Autism Speaks, a nationwide group that does a lot for the autism community and provides great information and resources for families with someone on the spectrum. “They offer something called First 100 Day Kit, which was super helpful for us. It outlines what the next steps are after diagnosis and also acknowledges the difficulties of this process and the range of emotions that you will go through,” Kasie mentioned.
With the help and resources provided by Autism Speaks, Katie realized how important it was to get Camden signed up for disability and other things that the government provides for people on the spectrum. “The wait time for these things can be up to 8 years,” Kasie shockingly admitted. “We knew that we needed to get Camden on the list as soon as possible so that he could get the help he need when the time came for him to need it.”
“If you’ve never walked down this road, it’s hard to know where to turn,” Kasie explained. This is why groups like Autism Speaks are so important. As of 2022, 1 in 44 children has been diagnosed with Autism in just the U.S. alone. Because of this, it’s important for all of us to recognize the realness of silent disabilities and to have compassion, kindness, and empathy for those that struggle with things that we can’t see or understand. Not everything is always how it appears. “We have been very fortunate to be a part of such a great school district that truly understands,” Kasie said. “Our journey with autism has been one of the most rewarding journeys our family has gone through. Our hope is to be able to help others along their journey as well.”
