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

[recoveringchloe]

I have worried about my daughters future ever since I knew there was something wrong. Before I had my daughter, I worked at a day center for people with developmental disabilities. About 70 % of those people who came there every day were over 40. I would watch the elderly parents bring in their elderly children every day. I watched them try to find living situations for them when they could no longer care for them.

I am DETERMINED to work as hard as I can and pray as hard as I can to make sure that doesn't happen to my child. At this point, she is only 3, so I keep faith that she will recover beautifully and will be able to take care of herself. That is how I deal for now.

[momtopaul]

i have been totally torn apart about this and the recent article in salon.com just has made me inconsolable.
being an older mom (50 to an 11 yr old)- i worry -who will take care of my child-what happens when the testosterone kicks in? my older brother who is very sick has taken over since my father died in terms of trying to get my mother to face the reality of what is to be with my son. he is trying to make his kids face the reality that they will be my son's care taker. he is running into brick walls. my son's piano mentioned that my son will soon be towering over me in a few months. i tried not to cry. he is a very gentle soul; but i cannot predict what will be.

[DaleSusanEdmonds]

Thanks Kim for being brave enough to say your private fears out loud. I am the older sister of an adult brother with severe autism. What happens to him has been on my mind for years. He has always lived at home with parents, and can't live alone. I had trouble getting anyone to talk about it and started doing some research on my own. It's never too early to start the conversations. Unfortunately, any accident could happen to parents, and kids could be left without the proper preparations. There are some great conversations you can start now with extended family or other potential caregivers so that anyone who might need to make decisions on behalf of your child (even, temporarily, in an emergency) would be prepared. Habits, medications, doctors, schooling, likes/dislikes, your hopes and goals for them should all start to be discussed and recorded now. You can find some questions to start these conversations, as well as a great resource from a couple lawyers who specialize in working with special needs families at http://www.talk-early-talk-often.com/special-needs-adults.html

[RimlandFanWA]

Kim, you definitely hit me in the gut . I try to move forward and nowt dwell on my biggest worry. So many people did not understand the level of my grief when my son's ONLY sibling died 3 years ago. I was grieving for losses x2 - knowing that not only did I lose my son's best friend, but that now there was no one, not a single person, who would be there for my son when he was left on this earth alone. This, more than anything, drives me to try to ensure he is a highly functional young man in the years to come. I shudder to think of what will happen to all of our kids, every day.

[WadeRankin]

My wife and I don't want to worry about whether the burden will fall to our son's older siblings (who love their brother dearly, but without doubt will have their own issues to deal with), or if he will become another ward of the state, warehoused away. That's our motivation for fighting every day to help our son toward true independence. Thanks Kim, for highlighting both sides of the struggle.

[TheresaC]

Oh Kim - you hit right where it counts every time. So many of us carry that constant fear and worry of what will happen to our children as we age and they grow into adulthood. This is what makes autism not just our problem. So many in a position to help have turned their backs on our children and our families and now we are years into an out of control epidemic of children that very few know how to help or care for.

Andrew Wakefield-God Bless you. You dared to say autism and vaccines in the same sentence. You search for truth. You will prevail.

[KentHeckenlively]

Kim:

You state the fears of autism parents so well. I love that you are such a warrior mother. From all of our efforts I know we will get our children back.

All the best,
Kent Heckenlively

[TannersDad]

I have faced this question everyday since my two heart attacks at 38. Now with losing my job and the financial crisis it bothers me more. I actually tried to avoid reading this story because I knew that it would upset me. You do such a great job Kim. I hope that this story helps some people move to action. We need to put a plan in place now. I found and posted this PSA video from Canada last October. If you can not understand our lives from Kim's great writing maybe a few pictures would help....
The most beautiful child becomes an adult. Pay now or pay later. Pay for Autism recovery now The bailout for the Children with Autism who grow into adults that did not get proper treatment will run into the trillions of Dollars
http://www.causecast.org/videos/3131

[Barbara Fischkin - Huffpost Blogger]

Kim

You put these two issues, Sky Walker and Dr. Wakefield together for good reason. They are connected. We need good doctors like Dr. Wakefield who will help to cure our kids who do things they cannot control - things that are not their fault,

Until then I have a pact with my 21 year old son with autism. If I promise to live to 120, will he promise to die the day after I do?

[Twyla]

I am at a loss for words, because I am just too sad about all these kids with significant disabilities becoming adults who someday will not have the loving care that we their parents provide.

[bluevalentine]

This is the part of vaccine injury that I can barely stomach to think about. None of it is good, but THIS is where the heart stops. The bottom line is that NO ONE can care for our children like we can. And I can't imagine what will happen when I am gone? My son will be added to a list of someone's to-do's, and that will be that.
Kim, a heart wrenching piece. I feel your pain and it is to painful to comment further:(

[JohnDanStone]

Kim

You have put your finger on our greatest fear: this idea of not being even allowed to die. It put me in mind of the satirical opera 'The Emperor of Atlantis' written by in-mates of Theresienstadt concentration camp Peter Kien and Viktor Ullman, in which the Emperor has placed a ban on death.

I am sure this has alway been the fear that haunted the parents of disabled children (but now with extraordinary numbers). Who will actually care when we are gone (they so obviously haven't so far).

John

[PBMom]

I think it is a very unnatural thing for me to hope that God calls my son home before it is my time to die. We're in Texas, the capital of the "Fight Clubs" in our state schools. Our family on both sides are too overwhelmed to take responsibility for him if we die. He is nonverbal, very few signs to communicate. I will be surprised if he will be able to hold a job, but hopeful nonetheless. I remember reading this story of this 100+ year old woman who said she couldn't die until her son with disabilities did. He was 70-80 years old and did finally die and she did shortly thereafter. I see this as my fate. There will be no "retirement" for us and it won't be because my 401 K has become a 201 K either.

[Sunny Polito]

Thank you, Kim, for this excellent piece. My boys are turning four next month and I'm already worried about who can care for them when they're grown. LIke many have already commented, we just keep praying that many of these kids will be recovered long before they reach adulthood.­.. And I'm with the rest of you that are praying God's grace would shine on Sky Walker and somehow insulate him from the pain and fear he must be feeling. That story is the saddest scenario I can imagine...

[PaulsMom]

Thank s Kim...this really HIT HOME . I am a single mom also. My son just turned 18. I am 52. My biggest worry BY FAR is what will happen to my son when I am gone. Paul has a twin sister and a sister who is 20. They have said they will take care of him, although he has worsened in the past couple years and I have not heard that from either one of them in a long time...jus­t things like, "Mom, how can you put up with this every day?" I have never felt so completely alone in all my life. I live each day as it comes. I also have no idea what I will do this summer. I have no one to watch him, cannot take him to work(I clean other people's houses) and I HAVE to work...or lose the house...Su­mmer school is only part of the summer and only a couple hours/day. His twin sister will be working full time and I can not depend on her to watch him so I can go to work....My oldest works at a camp for disabled kids. She lives there for the summer. Paul is too old for camp this year...I REALLY do NOT know what I will do. I have searched for a way to earn a living from home, but have come up with nothing, as I have no money to invest. I REALLY need some prayer...T­hanks.

[bluevalentine]

Prayers your way hon, many, many prayers. God bless you.