Why I Can Never Die: Autism and Aging

You think wrinkles and gray hair are the scourges of aging? Try imagining your child with autism as an adult and at the mercy of a state run home, an institution or even prison while you're slumbering away in a pine box.

I'd be happy to look like a Shar Pei if I could stop worrying about what is going to happen to my girls when I die. I sit at Church on Sunday and listen to my priest tell me about the joy that awaits in heaven. "Are you crazy?" I think to myself. "What will happen to my kids?" I know won't be the only Mom up there (hey, a girl can hope for the best) who is wracked with worry. We'll wear holes in the clouds as we pace.

There are two stories in the media right now that address my "I can never die" fears. And they highlight why I think medically treating autism is imperative, as tens of thousands of cute youngsters with autism race toward adulthood.

First is the tragic story of Sky Walker, an eighteen year old with severe autism in Portage County, Ohio. Sky was in jail for months, charged in the beating death of his single mother, Kent State University Professor Dr. Trudy Steuernagel. (He was just released to a more appropriate facility in Ohio, I'm told.) Sky is profoundly affected by his autism. (You can read full details on the Sky Walker case from arrest through arraignment here.)

I think of Sky every night when I tuck my girls safely into their beds, knowing he's sleeping somewhere in Ohio, without a mother's kiss goodnight. He must be terrified, confused and angry. I can barely think of Dr. Steuernagel and her violent death without losing my breath. It's every autism parent's nightmare come true. You're dead and your kid is alone in the world. That she died (allegedly) at the hands of her son makes the case unbearable.

Second is the story of Dr. Andrew Wakefield, a British physician at the center of the increasing questions about vaccines and autism. He is facing a challenge to his career that rivals anything that happened in Salem, Massachusetts centuries ago. It would be impossible to summarize the gauntlet Dr. Wakefield has navigated in his effort to medically assist children with autism in a short post. You can read about it here. Dr. Wakefield, and a small cadre of doctors like him, is fighting to help children with autism function better.

I don't think people with autism are naturally violent. I also don't believe they are mentally ill, even though the diagnosis is classified as mental illness. I think they need far more medical care than the current system of shunting people with autism to psychiatrists and neurologists is able to offer. Addressing the real physical problems associated with autism can greatly ameliorate dreadful behaviors. Most traditional docs simply don't believe autism is treatable outside of therapy and powerful psych drugs (both of which have their place in treatment, but they aren't the only options.)

Oil of Olay and Lady Clairol will get me through the next couple of decades. By then I pray that we can treat/manage/cure (call it whatever makes you happy, this post isn't about choosing sides on that debate) autism so that that there will never be another Sky Walker facing murder charges because of his behavior. And that there will be thousands of doctors like Dr. Andrew Wakefield to make that happen.

Then maybe, just maybe, "rest in peace" will be an option for those of us with a child on the spectrum.

Comments

[nhokkanen]

Thank you, Kim, for another insightful column that's laser-focused at both heart and mind. Unfortunately many parents may have health problems similar to their children's, but are late-onset from a lifetime's accumulation of toxins rather than injected bolus doses at an early age. Combine oxidative stress and emotional stress and that's a recipe for illness and premature aging. It's so difficult for a primary caregiver to maintain oneself when relatives and friends who would have helped a neurotypical child have become silent and invisible.

[amdachel]

I think that this is the real issue. This is what the folks at the CDC and in the AAP are losing sleep over. No one will be able to lie their way out of the disaster soon to befall this country. Kim's daughters, my son, and the children of hundreds of thousands of parents will be dropped on the doorsteps of the U.S. taxpayers. And when they're lined up at every Social Security office in the county at age 18, it'll be just the beginning. Eventually, when worn out parents everywhere can't take care of their children anymore, America will have to. The only problem is NO ONE KNOWS THEY'RE COMING. The really big lie about autism-that it's all just better diagnosing-has covered up this pending tsunami. I've written about it countless times, but no one pays any attention, mostly because it's not happening right now--but it will be---soon.
Anne Dachel
Media editor: Age of Autism

[PaulsMom]

Yes, Anne, you are right on target....and no one WANTS to listen...call it denial, like what we were in when we watched our kids drift away into nothingness...I have given up on the school system after fighting the losing battle for years, and have been trying to focus on HEALING my son...I feel it is my and his only option at this point...I CANNOT give up and I CANNOT DIE...as long as my son is still Autistic. I feel that it is imperative that I find the keys to unlock him. The ONLY PEACE I feel is that fact that I know my God is in this with us and ...seeing my son's beautiful smile when I tell him I will never give up. He has no speech, but he says a lot with his eyes, since his eye contact came back at age 6.
Well got to go...he let the dog out ..have to look for her.........

[dugmaze]

Excellent article. This is one subject that is thought by every parent but rarely discussed. I guess we are too busy with our children.

Thanks for the insight. Brought tears to my eyes but everything does these days!

[Traci Landes]

Thanks! Perfectly written! Glad I'm the only one that feels this way. Never thought I would want to outlive my kids, but can't handle the thought of what will happen to my son when I am gone.

[KFuller]

Every parent with a child affected by the epidemic of Autism is thinking this, number one we can never die. Second, that maybe if I live to be 150 years old I can see my child completely healed.
Our son that is affected by Autism is our youngest. He is lucky to have 2 older siblings that would fall on a sword for him. Autism doesn't just steal the affected child's life, it changes the course of everyone in their immediate families lives. I am confident that our older kids will take care of their brother forever if they have to. It isn't fair to them, but they know it will have to be done.
Three lives stolen and changed by Autism.

[mlinn]

Amen, Kim. As the mother of two boys with severe autism I can never die, either. If things stay the way they are, I probably can never retire, can never take a vacation alone with my husband, can never watch either of them graduate, get married, or have children of their own. I am hopeful that things will change, that these children and this lost generation will eventually be the force that drives a shift in society for the better. On one hand it's nice not to have the superfluous, material things in life to distract me from the fear and the force that drives me. It's why I scoff at those who criticize or discount parents of children with autism as fringe, emotional, or crazy. They simply have no idea what they are dealing with. We are strong, persistent, and ruthless. We make Sarah Connor look like a cream puff. We have nothing to lose and everything to gain. Yeah, it might suck to be a parent of a kid with autism, but more and more, it sucks worse to cross one.

[kellianndavis]

"Oil of Olay and Lady Clairol will get me through the next couple of decades."


......nip and tuck is always an option too Kim! (Although, my guess is you won't need it ;-)

Seriously, it's a tremendous heartache to read about Sky and imagine him all by himself in that lonely place without a parent to love and care for him. Sometimes, the shear magnitude of it all is just too much -- this is one of those times.

God -- bless and keep close watch over Sky and the tens of thousands of children with autism, who will one day be without their parents. Give them peace and comfort.

Kelli

[RachelAG]

My niece, Sophie, has Autism. A couple of years ago my sister asked me if I would take the kids if anything happened to she and my brother in law. I said I would, and she asked "even Sophie?" My answer was, of course! But it did make me think about just this issue. If the pharma companies don't want to address the causes, and the insurance companies don't want to pay for the treatments, maybe when the government does a financial analysis of what it will cost when these children become adults and are left on their own somebody will sit up and take notice.

[lhsis1]

Sorry, that published in the middle of my sentence for some reason! Anyway... I can't tell what the future holds for my neurotypical son, either, but I must admit that his future doesn't cause nearly as much anxiety. I cling to the hopes that the various biomedical autism treatments we've tried and continue to try in the future will help my older son become a happy, healthy adult who can function in society. Pretty much what every mother wishes for her children!

[lhsis1]

Another great piece, Kim! With both Sky Walker and Henry Cozad in the news, thinking about what the future may hold for our kids can be painful and scary. The positive stories you hear about adults with autism help, but not being able to know what the future holds is so difficult. Then again, I don't know what the future holds for my

[bensmyson]

I watch the calendar as if it is the shot clock in the NCAA finals with my team a basket behind. I am 50 years older than my autistic son who was just kicked out of his preschool today for hitting a couple of kids and throwing furniture, "Big furniture!" as the teacher said to my wife.

Ben is barely on the spectrum and yet these concerns of yours are mine as well.

Today when my wife brought my son home, he came into my office all smiles. Climbed up in my lap and with a stern but gentle voice I asked him, "why did you hit your friends at school today" he immediately fell on the floor crying, he didn't look at me like I was speaking in tongues, he knew what I asked him and he understood what it meant. I believe because his 3 mornings a week preschool is aware of his diagnosis he is seen differently and when one child pushes another, that's normal behavior, when Ben does it, it's "Autism" and that's why we get a call.

If I'm gone, who will ask him the questions and who will interpret the answers? Ben knew why he hit his friends, he just didn't know I'd understand.

My work is to push hard now, right this minute. We should all work for our children, typical or not, like there are only seconds left on the shot clock. Who knows what tomorrow might bring.

[andreamk]

Thanks Kim for this.

I read comments on local news blogs about Sky Walker -from just regular ole people who haven't got the faintest clue about what Sky Walker and Trudy Steuernagel contended with- to say they are cruel and harsh would be an understatement. Sky now goes it alone without his biggest advocate. I too think about him daily.

People are always praising Autism Speaks for raising awareness to autism. I think the focus should immediately shift to awareness of the adult population. I doubt that will happen though.

I have been sicken by the denial I have seen come from the Autism Society of Ohio on the Walker case. Oh sure it's sad and all that but it's rare. So, rare it happened again in Oregon two weeks ago.

I was however, pleasantly pleased to learn about the Liz Birt Center For Autism Law and Advocacy this afternoon.

http://www.autismone.org/?goto=birt

This is something I plan on getting involved with, I hope others will see the need and importance of such a resource.

[HeatherK]

Excellent piece, Kim. Your feelings resonate among tens of thousands of parents whose children are affected. Thank you.

[Louise Habakus]

Everyone, read this piece and forward it widely. We all have an automatic filter that screens out irrelevant information. It's mostly useful; it helps us to remain functional in the face of total data onslaught. Most people read "autism" and screen out the rest. Here's a short piece that serves as a good reminder that we should not tune out this autism epidemic. We are connected. When a segment of our society is suffering profoundly, we all suffer the consequences. Pay attention, folks. This is a freight train, gathering speed.