Despite growing awareness of autism, many families still get left in the dark. On an episode of Health Insiders, two families reveal how local resources changed their lives. Carol Del Sol, a Manager of Care Coordination at West Kendall Baptist Hospital shares what she’s learned raising her autistic son. 

Carol starts off by talking about how she noticed how her priorities had to change as her son has gotten older. Initially, the priority was always getting him to communicate. A common behavior autistic children share is difficulty in communicating with others. She says that’s still a priority for her but as he’s grown up she has started thinking about where her son is going to be in the future. What are his skills? What would he be good at in a workplace environment? She laments that once you get comfortable and feel like you understand your child, puberty brings along a whole new set of challenges. 

Carol says that in the support group that she hosts, she often hears from parents that they are uncertain on what will happen to their children once they age out of the school system. She says, unfortunately, “people aren’t knocking down our doors to employ our children. We still have work to do there.” Besides job security, Carol says that wondering what will happen to her son after she’s gone often keeps her up at night. “When they’re small you don’t even want to think about that. You’re just getting through the day. But as time goes on you must face that reality. That’s something we must bring to light,” she says. 

Jo and Rey Hondrade have two children with autism and have come up with different strategies to help their children succeed, such as teaching them sign language to help them communicate better. Their daughter is now even on the Honor Roll at her school. Jo explains that they found progress by striking a balance between pushing them and knowing when to step back. Jo says that it is important to not be scared for your kids. She says that they look to you as experts, and you need to be their cheer squad. Jo agrees with Carol that it is tough trying to prepare for your child’s future because you are always busy having to deal with issues as they happen in the present. Jo says that her son is now “a junior, he’s 16, a hip hop dancer, he’s a digital artist, he serves in our church, and there are things that he thought he could never do. But I always tell my kids ‘Never say no’. Give it a month and if you hate it, I’ll take you out.” Social anxiety may make things difficult for them but Jo says that it is important to gently push them beyond what they might be comfortable with so they can gain independence. 

Rey says he agrees with Jo and mentions that he has been doing career counseling with his son to get him prepared for college. His son is both interested in computer forensics and digital art. So, Rey advised him to continue his studies in computers in order to get a day job in IT while pursuing art as a night job. He says that, just like all children, his son is a dreamer, and you have to cultivate their interests but you also have to make sure they understand what is realistic. 

Both families used support groups and outside resources to better deal with the different issues that come with raising a child with autism. Rey says that these resources were essential because autism “is so overwhelming and it’s just like a monster that you must tackle. So, along the way you need people that know what you’re going through.” He mentions that, especially as a man, he needed a space to express how he was feeling. He admits that men tend to want to fix everything, but you cannot fix autism. “There is no cure. So, you’re going to have to go through the process and know how to tame your monster,” he explains, “once you know how to do that, your life will become better and your children will respond better.” He says that it is so easy to get hung up on your child’s deficits, but it is more important to keep stock of their talents and strengths. Rey says that nurturing your child’s strengths gives them the confidence they need to face the world on their own. 

There are a lot of myths surrounding autism that can also hamper your understanding of your child’s potential. For example, a lot of people think that autistic people are intellectually disabled, and that is just not true. Rey says that both of his children were diagnosed with intellectual and cognitive disabilities when they were little, but when his daughter entered kindergarten, she took a test and he and his wife discovered that she was gifted. So, she ended up in the gifted program. Rey says that his son, who always had trouble with sequencing and following complex instructions, ended up becoming a hip hop dancer and was able to teach himself audio mixing. Autism has no effect on a child’s potential for cognitive performance. 

Carol gives some final words of advice, she says that parents should definitely seek support, be your child’s biggest advocate, do not be afraid to ask for help, and that she welcomes anyone to attend her support group. She says she’s learned so much from other families, including Jo and Rey, and it is a safe place for honesty and understanding. Carol’s support group is on the West Kendall Facebook page, and they get together on the second Wednesday of every month. 

To watch the full segment of doctors and parents discussing the best things you can do to support children with autism, visit the Health Channel’s YouTube channel at: https://www.youtube.com/c/AllHealthGo