They're Still In There

No, your eyes do not deceive you. After a nearly two year hiatus, I am updating my blog.

I have no real excuses other than to say that I have been badly blocked. Not for lack of things to say, but for lack of desire to say them...here. In this venue. For some reason, the moment I log on to Coming Home from Pluto and pull up the "New Post" template, my mind goes blank and my fingers won't cooperate.

Until today.

My friend Marcia Hinds has been one of my personal heroes since Aaron was four years old. Her son, Ryan, is now 24 years old. He has a Masters' degree from Santa Clara University in Engineering Management. He now works for Boeing. He lives on his own. Drives a car. Has friends.

When Ryan was four, no one thought he would ever be able to hold a conversation, let alone the high-powered job he holds today. Except for Marcia. She knew then, as everyone can see now, that the happy, bright, responsive child; the one who met every milestone in his first year or so; then gradually regressed, his eyes losing their sparkle and drifting off into the middle distance as he lost all his words and skills and eye contact...was still in there. Marcia knew her boy wasn't born with "it." Something happened to him. She was going to find out what, defeat it, find him, and get him back.

And she did.

Marcia Hinds is my go-to inspiration on those days -- and I do have them -- when I feel like throwing in the towel.

The world needs to know: Our kids are not defective. They're still in there, intact, loving, creative, smart and beautiful. Fight for them. Don't give up. Never give up...even if sometimes it feels like a great idea. They're depending on us.

Marcia has written a book telling Ryan's story, I Know You're in There: Winning Our War on Autism, to be published soon. She's also graciously given me permission to post the following article:

AUTISM: THE REAL STORY NEEDS TO BE TOLD

By Marcia Hinds

Imagine a world...Where children with recurring fevers, unexplained seizures and chronic rashes are denied medical treatment.Imagine a world… Where increasing numbers of children show up in our schools without speech, lost in their own worlds and have no hope for the future.Imagine a world...Where children with severe sleep disorders, limited speech, nutritional deficiencies, stomach problems and severe allergies are sent to psychologists and psychiatrists.  

When you have a child with autism, you don’t have to imagine anything. If your child is one of the 1 in 50 diagnosed with autism, this is the world you live in! How can we just stand by and let this happen?

Some say the increase in autism is because of better diagnostic tools and awareness. Don’t believe it! The increase in autism is REAL!!! No one can MISS a child with autism. They have epic meltdowns in the grocery store and throw award-winning tantrums in restaurants. They do and say strange things. And some never say anything at all, including “I love you.” 

And yet there is hope… The solution to the autism crisis seems complicated, but in reality is simple if you know the truth about autism.  Autism is a complex medical condition caused (in most part) by an immune system that is not working properly. 

My son, Ryan, was diagnosed with autism at age four. I was told there was nothing I could do. The psychiatrist who was a “leading authority” on autism said my son would probably need to be institutionalized. 

But she was wrong.

Ryan’s recovery helped me realize autism is a treatable and changeable condition.  Treating him medically took time and the road was long and difficult. It felt like forever and our family made many sacrifices as well as mistakes along the way.  But the only institution Ryan ever ended up in was the university where he graduated Magna Cum Laude.  NASA paid for most of his master’s degree after he completed a paid internship with them.  Today at age 24, he works as an engineer at Boeing, when he is not surfing or going out with friends. 

We need to stop looking at this backwards. Autism is not the cause of the many medical conditions our children suffer from. In reality, it is the other way around. The problem in the function of our children’s immune systems results in autistic symptoms. Autism needs to be taken out the psychiatric journals and put in the medical books where it belongs.  Doctors who know how to treat autism medically understand that once the body works, the brain follows.

Unfortunately, there is no easy fix or magic bullet to heal our children.  It takes time to repair a child’s compromised immune system. Once the body has healed, they still need focused educational and behavioral interventions to catch up on what they missed when they were too sick to develop typically. 

Autism awareness is no longer enough! We need a doctor on every corner who says I know what this is and I know how to treat it. The world needs to realize our children are not broken. They are sick. And they can get better. With proper medical treatment combined with focused rehabilitation, many children have already made the long, difficult journey to recovery. If these children can be healed, more can be helped. We no longer have to sit and watch helplessly while our children slip away. 

Don’t believe all you've been told. You know that your child is ill. You've caught a glimpse, however brief, of the loving, vibrant child who is hidden behind the veil of autism. You know they are in there. We must join together to give our children a future. We can agree that this is a medical and treatable condition. This must be our message; unwavering, unapologetic and most of all, unified. The infighting among different groups about what causes autism and how to fix it must stop. This is the only way we will win the war on autism. We must never give up until we find the answers for our children!

 Please share this article with anyone who might bring attention to the issue that children with Autism are not getting proper medical treatment. You have my permission to reprint this article.