Karen McCarron, Alison Tepper Singer, and misplaced compassion
July 11, 2006 by Kristina Chew, PhD
Filed under Health
In Autism: The Art of Compassionate Living, Jennifer Liss of WireTap writes about the efforts of parents to battle stereotypes about autism and to raise understanding. Autism mother and ex-CNN news anchor Lauren Thierry—-who made the Autism Every Day video—-describes how she tried to capture “autism every day” to combat myths of autistic persons as “idiot savants” and of autism as caused by bad parenting.
“The party line is supposed to be that anything that raises awareness you’re supposed to be happy about. That notion is 10 years old. At this point we need to be showing the world what the vast reality truly is.” She says that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic — not images of kids setting basketball records or passionately playing the violin.
Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism.
One of those “dark and uncomfortable truths” that the article Autism: The Art of Compassionate Living refers to is the killing of autistic children by their parents. Dr. Karen McCarron, who allegedly killed her three-year-old daughter Katherine McCarron, is mentioned, as is Alison Tepper Singer, Senior Vice President of Autism Speaks an autism mother who, in the Autism Every Day video, talks about wanting to drive off the George Washington Bridge with her autistic daughter.
Both autistic and typical families have reacted with outrage and disgust to Singer’s statement — calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron. Thierry responds by calling Singer “gutsy and courageous.” She was expecting a call from Singer asking that the footage not be used. But that call never came. “You don’t say stuff like that — camera rolling — unless you are truly ready to play ball with the entire world,” Thierry says.
If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. “If this is not your reality, then God bless you,” she says.
I am an autism mother and I have not played out a “similar scenario” in my mind.
I am more than familiar with the “autism reality” presented in the Autism Every Day video. My son Charlie is no savant—just learning to read some sight words and one great bike rider and ocean swimmer—-and he has done and does plenty of the behaviors (head-banging, biting, screaming on top of manhole covers in public places) that lead people to associate autism with words like “nightmare,” “devastation,” and “desperation.”
Is it really “gutsy and courageous” to say you have thought of killing your child? To kill your child?
Charlie and our family has been through every terrible autism experience—-the screaming at the doctor’s visits, the feces where they shouldn’t be, the bruises, the dwindling back account. You can read it on Autismland, every day.
As an autism mother, I share much with Thierry and Tepper Singer and the other parents interviewed in the Autism Every Day video and in Autism: The Art of Compassionate Living. I have seen a lot of darkness but it is always washed away with the light that shines from, that is, Charlie, my beautiful, precious, and happy autistic son. Of course we need to show compassion for parents who have difficult lives and have made sacrifices for their autistic children, but the majority of our compassion—our concern—needs to start with the autistic child, with autistic persons.
Otherwise, we are only reinforcing myths and stereotypes about autism.
And, as I wrote on Sunday, “Desperation” should not be a “fact” when raising a disabled child.
I am 52 years old, and over the years I have tragically found out a few things that I don’t understand why the medical community or government can’t figure out too. My son has autism, and epilepsy, my husband had a mitrochondrial disorder not inherited but environmental induced (according to Emory clinic in 1990)now it has turned into something else that is an autoimmune disease, maybe of the connective tissures or blood vessels. My daughter had kawasakis disease at two years old and now she is 28 and her doctor has pointed her toward a rheumatologist. She takes medicine for depression and for attention deficiet but she is top of her class and has a double major biology and nursing.(and she can spell deficit) We also have two identical twin nephews with autism, they recently both had a rash on their stomachs (indication of vasculitis) What do they all have in common besides genes, and probably vasculitis? A DPT shot that is what! Except for my husband, he reacted right away to a tetanus shot, and three years later the medical community gave him another one- then he found himself at Emory Clinic. THE DPT SHOT is diptheria, whooping cough and tetantus and these are not put together randomly, they have similiar antigens : proteins from the bacteria that our immune system recognizes and then responds to by producing stuff to destroy them. Vasculitis is what I think the whole thing is. Inflamation of the blood vessels. Either of the brain, the heart, the stomach which ever blood vessels are involved. Inflamed by a vaccine. Want More proof MY son reacted to his third DPT shot six hours after he received it and it was not the first time he reacted to one, he reacted to his second one too but not horrific like his third. His third was a stroke, and if I had not been watching his every breath I would have missed that thirty minutes he was in distress.I would like to thank Dr. Stanly Block for his advice and his bulling that destroyed my child’s life. One more thing in 2003 my son was finally dignosed with epilepsy he was 17, and I knew it for YEARS! What gave it away was his falling down, jerking- having seizures. Once again the medical community flunked and it took them 17 years to get it right. The doctor finally tried to put him on DEPOKOTE the same stuff John Trovolti’s son was on. I refused, I had had enough, I stood up to the Doctor-God and followed my instinct. We came home with no seizure medicine and my husband went ballistic, kepted asking me why. I told my husband when his mother went on Depokote I noticed she became worse and died. He went to the computer looked up his mitrochondrial disorder called oxidation phosalation(spelling is wrong) and it said depokote was a bad thing for this disease. My son is now on Keppra and he is fine, no seizures and he has his driver liscense and he is going to a small community college and passing (barely and with my help) and he is funny, but very quiet and of course no social butterfly. Too much information you say, not good at spelling too you say, so maybe I am a looney. That may be but I have lived it and so that is how it is. I do not want anyone to follow in my shoes.