by Ryan and Megan’s Mom
My son definitely acted different and the stares and comments other people made were often cruel. But I still never told them about my son’s autism. That was especially true for the people who worked with him in gymnastics, swimming or karate. Only our family members, his therapists, and very close friends knew Ryan had been diagnosed.
It might have been easier for me to explain his odd behavior by revealing he had autism. But it would not have been what was best for Ryan.
People don’t understand what autism really is and many of those experts who think they do, have it wrong. As soon as the A-word is used, people assume that it means “game over.” They do not know that this is a neuro-immune condition that is medical, treatable, and surmountable.
Restoring a child’s health by treating the hidden infections, viruses and everything else that overloaded our children’s immune systems isn’t easy. But it is being done. And as the research and treatments improve, more children will get better. When our kids get proper medical, behavioral, and educational intervention full recovery becomes possible. And some children, like my son, can lose their diagnosis completely.
Ryan is now 28 and an aerospace engineer. He is one of the lucky ones to be in the right place at the right time to get the interventions needed to fully recover. But when he was diagnosed at age four, my son had every one of the thirty-five symptoms listed on the National Autism Society’s website. The “experts” there was no recovery from autism, no cure, and no hope…
But we beat autism. Part of the reason we did was because we set the bar high and celebrated his small successes. Little successes turn into big ones. But one of the important things I learned was when we told people about the “A-word,” they lowered their expectations. I once made the mistake of revealing Ryan’s diagnosis to his piano teacher. I was so proud of Ryan and what he had learned. I mistakenly thought his teacher should know what he really accomplished with my son. But after I shared, Ryan’s lessons were never the same. Empathy and understanding were not what my son needed. The piano lessons ended after the teacher stopped treated him like he was capable.
In the second grade, Ryan was placed in a class where the teacher had a special ed. credential. She knew a little too much about autism and just what my son shouldn’t be able to do. Her expectations for Ryan were lower. She knew just what autism was and had too much knowledge. And that year Ryan didn’t progress much. His teacher was just a little too accepting of “his disability.” She thought she was being loving and accepting. She really did try to help Ryan. But she was helping him to become the “best little autistic” boy he could be. He needed someone to expect him to succeed and act the same as everyone else. Ryan needed someone to no only encourage him to try the things that were hard for him, but also enforce the rules every child needs to follow.
Currently, the “A” word has a negative connotation. With understanding that will change. When it finally becomes accepted that this is a medical condition and kids can get better, we will change the autism paradigm. Or maybe we can just stop calling it “autism” and start calling it what it is, “a messed up immune system.” There is hope because it is possible to have a different outcome. But until people get it, I wouldn’t take the chance and share that a child has autism.
That being said, we need to tell people something so they know we are aware there is a problem and it is being addressed. This is explanation I used, “Ryan’s immune system wasn’t working properly when he was younger. We now have a doctor who is really helping him and correcting all the medical issues. And we are working hard to catch him up on all the things he missed.”
As parents we can never let anyone limit our children or prevent us from having dreams for their future. The really hard part is having a big enough imagination to see what your child may be capable of one day. Please never give up until you find the answers, no matter how hard your kid or the “experts” try to make you. And remember miracles do happen, but they only happen by hard work and sweating!
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom :
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. To preview my book, “I Know You’re In There – winning our war against autism” click on http://a.co/a5GWrpM
Contact info for Marcia: