"Yes. Today is the day." As I read about the murder-suicide of Maryland Psychiatrist, Dr. Margaret Ferne Jensvold and her son Benjamin Barnhard, ( MyFox DC Margaret Jensvold Autism Murder Suicide) I pondered if their tragedy began with this sort of detached speculation. "Gotta remember to stop by the grocery store and the bank before I pick up Ben from school. Do we need grapes? I should have checked. Did I fill out those forms for summer camp? Looks like I might need to get some gas on the way to work. When to end our lives...when to end our lives." Do these horrific thoughts just co-mingle with one's day to day internal chatter or do they eclipse rational thought over a period of time, like obsessions? Dr. Margaret was certainly the person we would have gone to to ask such a question, as psychiatry was her specialty. Did she plan their demise for several days? A year? Or did she simply pay too much attention to the passing thought that death was a pleasant alternative to life at a particularly weak moment? Seems odd that a pragmatic person known for helping others would act so drastically.
All we know is that Dr. Margaret had a lawsuit against the National Institute of Mental Health for sexual harassment and that a judge came along after an eight person jury found in her favor and overturned their decision. She was a compassionate professional who cared about women's heath and overcame adversity, according to her attorney. Her son Ben was a good kid and liked sailing with his dad. He was overweight, had autism, suffered at the hands of bullies, and his mom killed him before his 14th birthday.
During a recent conversation with my friend, autism activist, Ginger Taylor, I kvetched about my life. "No one is listening. My calls to our political leaders go unanswered. My pleas for local doctors to address the growing concerns of parents receive no response. Every time I do an interview the reporter's pen stops the minute I start talking causation. They smile, focus somewhere on my face (never the eyes) and tolerate the education. Then they nod and dutifully eruct a "huh, interesting..." so they can segue as comfortably as possible to the next meaningless question, "so what's your autistic (cringe) son's favorite toy?"
"Ever hear the story of Cassandra from Greek Mythology?" She asked. "Cassandra was given the gift of prophecy by Apollo, which she desperately wanted. After receiving the gift she made the mistake of refusing his advances. To punish her he made sure no one would ever believe her predictions. She accurately foretold the fall of Troy and the death of Agamemnon. Eventually she went mad because she spent her life predicting horrific atrocities but not a soul would listen."
That about sums it up. My days are comprised of discussions with doctors who do not care to hear what I have to say, despite the copious amounts of scientific evidence I have to present them. My calls and emails to state representatives are treated like spam. I am told by the creme de la creme of "autism specialists" (aka a made up title for someone who once talked to someone with autism and is therefore considered a specialist) that my son will most likely outgrow his condition. When I ask them to explain what "condition" in particular, his vaccine injury, bowel disease, autoimmune dysfunction, metabolic failure, chronic eczema, brain swell, etc. they look at me as if I am Medusa. After explaining that the gluten in play dough will be an issue for my child during therapy I am told by a flippant therapist (who I pay) that, "He's not going to eat it Mrs. Goes. He's going to play with it." I entertain the idea of grabbing her by the arm and whispering a little white lie into her ear. "Do you see this vial in my purse? It's full of battery acid. Now, I'm not asking you to drink it, but how about you stick your pinkie in and swish it around a bit? As the tip of your finger disintegrates you'll get just a teeny sampling of what my boy's perforated intestines are doing to him on a daily basis." I am fighting for my kid and my family every minute of every day. Ergo the term popularized by Jenny McCarthy for our rapidly growing subculture, Warrior Mothers. The sad truth about warriors though is that after they've spent a few years of their precious lives in battle, they are never quite the same. And some don't make it back at all.
"Are you there God?" It's me Margaret." Instead of grappling with the every day dilemmas of puberty like the popular Judy Blume book of my childhood, I imagine a grown up Dr. Margaret uttered these words in attempt to make sense of her messed up life. She needed answers. She chased the American dream like we all do. Psychiatry is not for slouches. She fell in love, got married, and wanted to have a family just like the rest of us. Then her son got autism, her marriage fell apart (her ex-husband is interviewed for the article) and a judge comes along and determines her version of events concerning the NIMH was "wildly exaggerated and skewed." How did she get here?
I know what it is to want to die. Until you are on your third sleepless night in a row nursing a newborn while your screaming toddler with autism disrobes and smears his bright yellow diarrhea all over your pajamas and the defenseless baby in your lap, you are not in a position to judge. Because of the successful media campaigns that have painted autism moms as reactionary celebrity-following idiots we are often blamed for our children's conditions. Never mind the fact that even the CDC admits the typical non-vaccinating parent has a masters degree and resides in a household that sustains an annual income is 75K a year or more. People who listen to the flatscreen on the wall think they know how it is. They don't. With autism you can be instructed on two completely conflicting versions of behavioral modification methodology and have each one presented to you as the God-spoken truth. One behavioralist will tell you to prevent your son from climbing at all costs. The very same day another one will tell you to create an environment in your home that is as safe as possible for him to indulge his "physical need" to climb. Who is right? The mainstream medical community tells you there is no cure for autism. The biomedical community tells you a cure is entirely possible...there are just a thousand different routes to success. And all of them cost. A lot. Oh, and don't forget--only so much time, tic-toc, tic-toc the window for recovery is closing. The same doctors who poisoned your child will tell you that although his tests reveal elevated levels of mercury, aluminum, cadmium and lead--how they got there is anyone's guess--the process of removing these poisons will surely kill him. Of course, it's entirely up to you if you want to go find some rouge doctor and take that risk with your child's life...and oh, by the way, you're going to want to catch him up on his immunizations today.You insist he is in pain. You are his mom. You know. You are told you just think he is in pain. Lots of autistic kids act like they're in pain. They're not, they're autistic. You point out that "autistic" is just a word made up to describe a bunch of behaviors. Behaviors that you and thousands of others are convinced are actually symptoms. You have the diarrhea, eczema and distended stomach to prove it. You are told all these symptoms simply have nothing to do with one another. Why are you always looking for problems that aren't there, Mrs. Mom?
You spend hours cooking organic GF/CF food that you are told is going to make your child better. It ends up in your face and on the floor. Your family tells you you're too lax on discipline and his developmental delay is no reason for him to not use the toilet properly. You explain he can have up to 18 bowel movements a day. Eye rolls and sighs. Your friends suppose that maybe you didn't breast feed long enough but it probably doesn't matter because don't you know, autism is genetic. Everybody knows that. Why are you knocking yourself out with all this holistic crap? Your colleague is constantly regaling you with stories of ultra successful aspies and auties and concludes each one with a nugget of his special brand of wisdom that is meant to convey that your life is not nearly as hard as you think. He's a big fan of The Secret. All the while the child you will protect with the ferocity of a lioness, kicks, punches, hits and claws at you because it's raining when he should be having outside time. Why can't you just make it stop raining? Your back is shot, your rotator cuff is blown, and you sustain bloody noses and black eyes as easily and frequently as blemishes. It's not personal. It's autism. And the screaming. The constant f*cking screaming. At home, at the store, on the bus, at the doctor's office, at the park, in bed at night. The thing is, you could take all of this, if only he didn't run like an escaped convict every time you left the house. This is the one thing that keeps you up at night, checking, checking and rechecking locks. He's only five and he can already outrun you. Constantly trying to escape his home, his body...his life, it seems. He has no fear and he just won't listen. Your alarm goes off and your very first thought is about how your neurotypical kids are suffering because of all of this and you start sobbing before you've even had your first sip of coffee. You pick up Ken Bock's book, The 4 A's. As you read you realize the shots, the food, the soil, the very air we breathe is quite literally killing your child. I don't care how vigilantly you guard your heart and mind against bitterness and negativity--in the face of these truths your word view is irrevocably altered. Your child is innocent and this was avoidable. This never should have happened. But it did. He's living proof. And they all know.
I am in no way condoning or justifying murder. I am trying to illustrate that much like the child soldiers in Uganda, mothers like Dr. Margaret are isolated, enraged, fearful, and hopeless. No good decisions are born of these circumstances. If the child soldier analogy disturbs you I'd like to suggest that unless you have a child with autism you have no idea how very much like a child you become. Nothing of your previous life or existence makes sense anymore. You are forced to relearn everything. Without support, faith, resources and gobs of money, it's terrifying. It's terrifying with all those things. Not everyone can make the transition successfully and come out whole on the other side.
Maybe the question we should all be asking ourselves is, why no media reports about the murder-suicides of parents of children with cancer, leukemia, and diabetes? These horrible diseases are also on the rise. Where are these killer parents? Surely they are out there. No? No. Because children with these life-altering and life-taking diseases are considered sick by the doctors that treat them and the communities that support them. There is also a standard of care for these children. There is no standard of care for children with autism. No protocol for the fastest growing epidemic in our nation. You tell your neighbor your child started chemo this week and you get a casserole. You tell him you started chelating her and you get a visit from the Department of Child and Family Services. One child has died from chelating because of a nurse's dosing error. How many children have died of complications from chemotherapy? Zero. Because it was the cancer that killed that child not the chemo. Period. The doctor said. The parents of these poor children are praised instead of ridiculed, supported instead of shunned. And most importantly, they are never held responsible for their child's condition. Could you imagine? "Yeah, I guess Monica's pediatric neurologist says it's cancer but you know, Monica. If you ask me it's probably a benign tumor with maybe a cyst or two."
If you are offended that I rank autism along side these tragic illnesses then that is for you to sort out on your own. This stance tells me you are under the influence of the archaic mainstream medical press. Autism is every bit as debilitating and tragic as these diseases. Science abounds with evidence that autism is indeed a medical problem including debilitating seizures, intestinal dysbiosis, encephalopathy, and auto-immune complications that can lead to death. The problem is if we start to treat these kids in the mainstream medical community as they have been successfully treated in the biomedical community, the chem trail their healing bodies leaves behind leads straight back to the mainstream medical community's parent organization, the medical industrial complex. I'm sure you can understand where this all gets a bit dicey. Yep, those autism moms are real wackos. Conspiracy theorists every last one of them. Haven't you heard? They kill their own children.
In the coming days speculation will abound about Dr. Margaret's mental state. Talking heads will opine, psychiatrists, much like herself, will be interviewed. Two more deaths due to autism. It's all so normal and so common. Better diagnosis. Better reporting. These kids and their murderous parents have always been around. We're just oh so much better at identifying them.
LJ Goes is Managing Partner of The Misuta Project, Contributing Editor to Age of Autism and Executive Board Member of the Illinois Canary Party