by Marcia Hinds – Megan and Ryan’s Mom
Some people think we should just accept autism. They believe autism is a gift. They think if we treat the symptoms, we are changing who our children are. I probably won’t change anyone’s mind, but I need to say this anyway. Our children are the gift, autism is never a gift.
The autism diagnosis ripped away every dream my husband and I had for our son. Ryan was stranded on Autism Island and our family was stuck there with him. The “experts” said Ryan would need to be institutionalized. They said there was no recovery from autism, no cure, and no hope. But you can't believe all you are told about autism. Today my son works as an engineer at a major aerospace company. But more important than that is he has friends and is leading a typical life because we were able to help him medically.
Children are recovering from autism and yet the general public and most doctors are unaware this is even possible. They don’t know that an autism diagnosis no longer has to mean “game over.” When the total load on a child’s broken immune system can be reduced, then children improve and some like my son, can fully recover. That’s when parents no longer have to helplessly stand by and watch their children slip away.
When it is possible to improve a child’s immune function, children can learn what they couldn’t before. Yet, medical treatment alone is not enough. We used behavioral and educational interventions to catch Ryan up on all he missed once he was able to learn. Recovery takes time. And that wasn’t easy for a parent like me, who wanted my kid "fixed" before lunch.
I hope parents don’t give up too soon, like I almost did. After Ryan was diagnosed, even I didn’t believe he could ever get better. But we couldn't give up, mostly because at times we caught a glimpse of the kid that was hiding IN THERE.
Most parents I hear from are happy when they learn an autism is treatable. But every once in a while I hear from a parent who thinks differently. One mother told me, “Why would I want to change my child? She is not sick. She has a disorder. A wondrous disorder that makes her think, feel differently. She’s smart and perfect the way she is. You cannot cure a disorder. You can cope with it, but it can never be cured. It is not medical. It is neurological.”
It is hard for me to understand that kind of thinking. Some people feel that we should just accept autism, while others think it enhances their lives. They only want acceptance and understanding. They figure if they have a kid with Asperger’s, (like Sheldon on The Big Bang Theory) why would anyone want to change them?
But those who feel that way, fail to realize that those affected by autism do not all function at the same level. Many kids do not speak at all and for some every day is torment. Some children are in constant physical pain. There are parents that have to deal with self-injurious behaviors. And then, there are the families who have to worry about someone being physically harmed by an aggressive violent outburst.
Ryan said it best in an article he wrote. “…Some people think we should just accept autism. And that if a child is treated, it changes who that kid is. I am still the same person I was, only now I’m happy and can enjoy life. It is hard to understand that children are not receiving proper medical treatment because some people think we should celebrate autism. When doctors believe the medical issues associated with autism are just part of a “developmental disorder” children are not treated for the same medical conditions as every other kid. Is that really okay?” (You can see his picture on the magazine cover and read his entire article by clicking here.)
I have always accepted my child, warts and all, but never autism. Treating the symptoms of autism didn’t change the wonderful things about Ryan, but allowed him to reach his full potential and be who he was supposed to be before autism came into our lives.
The good news is that the medical revolution has started. The bad news is our doctors never got Autism 101 in medical school. There is a shortage of doctors who understand what autism really is, let alone know how to treat it. They are just starting to understand the immune connection. So finding a physician who treats the subset of autism your child still remains one of our biggest challenges. We need a doctor in every town who can say, “I know what this is, and I know how to treat it!”
All children deserve to be healthy and happy. Healing our kids does not mean that we do not accept who they are. We love them in spite of all the challenges autism brings. And it is also important to understand each child is an individual and will respond in their own way to medical, behavioral, and educational interventions. But we must never give up or stop the research until we find the answers to help every child!
ALONE there is little we can do about autism.
TOGETHER we will be unstoppable!
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 It was written for families looking for the answers to this complex neuroimmune condition we call "autism."
Contact info for Marcia: