There Oughtta be a...

Most people who know me well, know that I am not a fan of government.

Most laws of public policy -- no matter how well intended -- ultimately create more problems than they solve. All one needs to do is to look at how Prohibition, the "War on Drugs", "Three Strikes," No Child Left Behind, the creation of the Federal Reserve, and others, create criminals, crime, and social problems where none existed previously, filling prisons to overflowing with mostly non-violent offenders. Very few laws on the books today actually protect people. Most laws have one (or both) of two purposes: to increase government power and control over ordinary citizens and reinforce their dependence on it, and to enrich and empower those who benefit most from governmental power: namely, the Corporations.  Whose interests do most lobby groups represent but those of the big corporations? Who heads the government agencies supposedly created to protect the public, such as the FDA, Tobacco, Firearms and Alcohol, USDA, and others? Former executives of the corporations they purport to regulate. Who suffers when the FDA won't approve a foreign-made medication because the US pharmaceutical lobby blocks it?

 It doesn't take much imagination to guess whose backs are getting scratched, and it sure isn't ours.

Talk to any currently practicing physician about the long-term ramifications of "Obamacare," and you will learn that it will create a health-care nightmare far worse than the one -- and I do acknowledge it is a nightmare -- that it is intended to fix. Especially for those of us with children on the Autistic Spectrum, who often have to resort to going outside the parameters of what is currently considered "conventional" medicine to find effective treatment for our children. I've gotten more than an earful -- from more than one MD -- on how our kids will get lost in a medical system that won't treat them until they develop lupus, MS, leukemia, diabetes, and other serious autoimmune conditions because doctors will no longer have the freedom to practice medicine as they deem appropriate -- thus making those who think "outside the box," those who partner with parents and patients in their decision-making process, and who ask the deeper questions that challenge "conventional" practices...criminals. As a parent whose child was essentially ignored by "conventional" medicine but helped by "mavericks," that prospect fills me with unabashed terror.

But I digress!  I'm not here to post an anti-Obamacare diatribe. I'm actually going to celebrate one of government's own members, Rep. Bill Posey, who recently spoke with passion and clarity about what we are faced with as the rate of autism diagnoses continues to skyrocket unchecked:

 I must concur with the experts who have been willing to speak out, that the epidemic increase in the rates of autism are not a 'genetic' epidemic. Indeed, you don't have genetic epidemics. While there is likely a genetic component to many who have been diagnosed with Autism, we must seriously consider that there are likely several key factors in autism. 

Also, to some who have suggested that the increase in Autism is due to better diagnosis, you don't go from 1 in 10,000 to 1 in 80 in three decades due to better diagnosis alone. And, if that were the case, where are the tens of thousands of autistic adults in their 40s, 50s and 60s? While better diagnosis may be a factor, common sense says there is a real increase and something is causing it.

And this:

I was pleased to participate in a November 2012 House Oversight and Government Reform hearing on the Federal Response to Autism. That was one of the most attended hearings I have participated in since coming to Washington in 2009. Indeed at this hearing it was standing room only, and overflow rooms had to be used to accommodate the public. This was a much anticipated hearing from many parents of children suffering from Autism who want clear and unbiased answers to questions surrounding the epidemic. 

I, like many in Congress, were frustrated with the lackluster response from the federal witnesses, particularly the CDC witness that was evasive and took more than five months to respond to the Committee's questions. The responses that finally arrived this month were incomplete, often evasive, and showed a complete lack of urgency on the part of the CDC. I was also disappointed that the federal government witnesses did not have the courtesy to remain at the hearing to listen to the testimony of the public panel representing non-profit organizations and academic institutions focused on Autism and Asperger's Syndrome.

I know my fellow voluntaryists may look at me askance as I say this, but since it is highly unlikely that these draconian entities will be abolished in our lifetime, and if we have to live under a system that creates crimes and criminals, let the laws at least make criminals out of those who actually perpetuate harm.

UPDATE! 9/15/13:

The next round of hearings has been scheduled for November, 2013.

The Sweetest Farewell

Last week, we said goodbye to our third beloved pet over the space of one year. This time, it was our tiny, 18-year-old tabby cat, Samantha.

Samantha was with us even before Aaron was born. Rescued about 16 years ago after a hardscrabble life on the streets, she was such a feisty, tough customer, she could scare the fur off our Golden Retriever with little more than a hiss in his direction. Indeed, Romeo would literally back out of any room if she was in it.

From the time we brought Aaron home from the hospital, Samantha was NOT his biggest fan. She took one whiff of the tiny infant in the carrier and slunk off, no doubt huffing to herself. And the non-relationship didn't change until the last year of her life, when she occasionally allowed Aaron to pet her or lie down next to her and talk to her. Even so, though, when it became apparent over the last few days of her life that the time to say goodbye was rapidly approaching, Aaron's reaction was disturbingly indifferent. When I told him we would have to take Samantha to the vet to be "put to sleep" soon, his response was, "Sweet! Now we can get another dog -- and another cat!" Yikes. It's moments like that that make me wonder if the "empathy chip" will ever work properly.

Imagine my surprise, then, last Tuesday when the moment finally came, Aaron came down the stairs, sat down next to her, petted her gently, and with great sincerity and feeling, said the following:

"Goodbye, Samantha. I love you...I'll always love you. I'll never forget you. I hope you have fun in heaven."

Then he kissed her sweetly on the head, and as I stealthily wiped my tears away and proceeded to put Samantha in a padded box for the ride to the vet, he headed back upstairs to his waiting video game.

I have to accept that Aaron may never be the type of boy who wears his feelings on his sleeve. But when the chip works...it works.

Samantha 

1995-2013

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.