“Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the familymembers, one by one..”
Wow...that's a pretty heavy statement to make about autism, isn't it? The statement was written by Dr. Jerry Kartzinel as an introduction to a book written by Jenny McCarthy called "Louder than Words: A Mother's Journey to Healing Autism".
In the same introduction, Dr. Jerry says “Jenny has done an incredible job retelling the story of Evan, who also was forced to make the perilous journey through Autism. Autism is not a dead end diagnosis. It is the beginning of a journey into faith, hope, love, and recovery.”
Very interesting.
So, Dr. Kartzinel... autism is "not a dead end diagnosis and it is the beginning of a journey into faith, hope, love and recovery" *but* it "steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the familymembers, one by one..”???
This is definitely a "WTF??" moment for me since he contradicts himself in these two sentences alone! What's worse is that he runs an autism clinic (he treats children and has this attiude - fabulous) and is the father of an autistic child!
I have the transcript of the Larry King Live interview that was done with both Jenny McCarthy and Jerry Kartzinel. (Read it here: http://transcripts.cnn.com/TRANSCRIPTS/0709/26/lkl.01.html)
This is how Larry King introduced him:
"Now joined by board certified pediatrician from Jacksonville, his practice is devoted to the research and treatment of autism and other neurodegenerative disorders. He's the father of an 11-year-old son with autism, and wrote the introduction to "Louder Than Words." Did you kind of specialize in this because of your son? What happen before the other?"
DR. JERRY KARTZINEL, PEDIATRICIAN DEVOTED TO AUTISM RESEARCH: "Oh Absolutely. I had four boys. It was my fourth boy who developed autism shortly after I gave him the MMR. My wife says, you broke him, now you go and fix him. I went what? I didn't even have a clue yet what happened. "
I'll spare you having to read the transcript here (you can read it at the link I posted, though). Throughout the interview he constantly refers to autistic children as being "broken".
Jenny McCarthy is the author of "Louder than Words: A Mother's Journey to Healing Autism", aside from her success as an author, Jenny has also been featured in Playboy Magazine (not as an author...if you get my drift), some movies ("BASEketball" and "The Stupids" to name two movies she's been in), and two short-lived TV Series that I have never even heard of: The Jenny McCarthy Show and Jenny.
I have not read the book, but I've been seeing Ms. McCarthy's name all over the place, from Oprah ro Larry king Live to the front cover of People Magazine. I had tried to stay out of this, I really did, but I do have my reactions to the hullaballoo caused by Kartzinel's comment. I admire Ms. McCarthy's desire to help her son, but at what cost to his self-esteem or health later on? (That's a question for another day)
There has rightly been a lot of uproar among autistics and some parents about this statement that was made by Kartzinel in the introduction of the book. Kevin Leitch who has a blog called Left Brain/Right Brain wrote an open letter to Dr. Jerry Kartzinel and read it in a video which he has placed on his site. Watch it here: http://leftbrainrightbrain.co.uk/?p=682
The transcript of the letter is as follows:
Dear Dr. Kartzinel,
We understand that in the introduction to Jenny McCarthy's
new book on autism, you describe it thusly:
"Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one.."
As parents of autistic children we would like you to know that we totally reject your characterization of our children and consider the implication of their existence as soulless as dehumanizing and destructive to their development. These are children who are already more likely than their non-autistic peers to be bullied and ostracized. We feel that describing them as soulless will only add to the stigma surrounding autism and the negative perceptions the general public have of autism and autistic people.
We believe that one of the most important things we can do as parents is to raise our children with a sense of their intrinsic value. We believe that it is right to try and plant the seeds of confidence in their young minds. The fact that they are autistic makes this process even more important as they will face characterizations and judgments throughout their lives. We do not believe that describing them as soulless will help in this respect. We cannot help but think in fact that it would be impossible to feel anything other than hurt and insulted by this description.
Further Dr. Kartzinel, we do not accept that our lives as parents of our autistic children are ones that have had the marrow of life relentlessly (or otherwise) sucked out of them. On the contrary, as several studies have shown, many parents of autistic children - and those with other disabilities - come to terms with their new lives. If we may quote from King et al (2006):
"The themes indicated that raising a child with a disability can be a life-changing experience that spurs families to examine their belief systems. Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents' experiences indicate the importance of hope and of seeing possibilities that lie ahead."
And from Bayat (2007):
"specific resilience processes, such as: making positive meaning of disability, mobilization of resources, and becoming united and closer as a family; finding greater appreciation of life in general, and other people in specific; and gaining spiritual strength." It then concluded that "a considerable number of families of children with autism display factors of resilience-reporting having become stronger as a result of disability in the family."
And in fact Bristol (1987) found poor adaptation in families of autistic children:
"was predicted by other family stresses, unwarranted maternal self-blame for the handicap, and maternal definition of the handicap as a family catastrophe."
As these words have been heard Dr. Kartzinel, you may have wondered who the children are in the images that accompany these words.
These are our children Dr. Kartzinel. As I hope you can see, they are not soulless. They range in medical diagnosis from severe low functioning autism with retardation to high functioning autism but they all share a common set of characteristics.
They have enriched our lives Dr. Kartzinel. They have not sucked the marrow from them.
And they are not soulless Dr. Kartzinel. They are children. We think they are beautiful children undeserving of such a brutal, harsh, inaccurate description.
I hope you can hear us Dr. Kartzinel. I hope you listened.
I hope Kartzinel reads this letter and watches this video too, Kevin. I really, really do.
How can he accuse any of us of being soul-less? How can he make that statement and raise a child and operate a clinic for autistic children?
How is this attitude helping anyone?
I've met lots of autistic people through the support group that I run, the online newsgroups and mailing lists that I frequent and am autistic myself, so I can honestly tell you that you will never see such passion, intelligence and soul in many people as you would see in autistic people.
I've seen the activity on a newsgroup which is all about autism and spirituality, run and posted to by people on the spectrum. I can tell you, there is soul there, for none can be as passionate about their faith or spirituality as an autistic person if he or she chooses to follow such a path. I am passionate about my faith and my connection with the Divine. If I had no soul, could I do that? I know an autistic who is a Buddhist Nun and she is passionate about her path.
Can you claim that you are this passionate, Dr. Kartzinel? How close are you with your God? How acquainted are you with your Spirit? Even if you are not religious, how much of your spirit do you put into your work or daily life?
I live every day in connection with my spirit and I appreciate the beauty that this world has to offer, but am not blind to the dark side of things.
Can you imagine having a father who constantly sees you as "broken", "soulless" and "relentlessely sucking life's marrow from the family members"?
What kind of self esteem would you have growing up with that kind of attitude (and let's not forget Mrs. Kartzinel who said "You broke him now you fix him!") being directed at you?
Thank God they aren't my parents!
But...this is just another statement about autism that has become famous. It is just another piece of "bad PR" against autism that seems to frequent the media. It's just another nail in the coffin in positive public image of autism and what we are capable of as it were. It's just another thing to discredit us and destroy our self worth even more.
Ok, that was probably a little too emotionally driven, but it is how I feel about this statement. It's hard enough being autistic in a world that encourages people with other disabilities to "be all they can be" and "there's nothing wrong with you"; but tells us autistic people that we are little more than vampires who suck the life marrow of our families, empty shells of children who were "stolen" or had their souls taken away, and are worse than cancer and bird flu.
It is an attitude like this that prevents any autistic child from growing up with a sense of self-worth.
It is an attitude like this that prevents those of us who are doing well from getting far in our careers or lives because we are instantly thought of as retards, manipulators or worse.
It is an attitude like this which prevents autistic people from benefitting from any form of care.
It is this type of attitude which caused people like Karen McCaron, Daniella Dawes (http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=5925) , Diane Marsh (http://www.azstarnet.com/metro/174978), Alison Davies (http://www.autismvox.com/coroners-inquest-on-the-deaths-of-ryan-and-alison-davies/), Nicholaas and Agnes de Groot (http://www.raggededgemagazine.com/departments/inclusiondailynews/001098.html) and so many more parents and/or caregivers to kill their autistic children. (For a good article about and list of murdered autistics, click here: http://www.thiswayoflife.com/murder.html)
You don't think this could happen? It can and it has many times over. Read the news articles. See the blogs. It's out there. It's real and it happens too many times.
Autistic people are very aware of what is said about them. Read the numerous blogs and newsgroup postings to see just how aware they are!
Here's a beautiful one written by an Apie adult who writes about her own struggle with depression and suicidal thoughts: http://aspergersquare8.blogspot.com/2007/08/environmental-triggers.html
Let's not forget about those autistics who have tried taking their own lives (I'll leave their names out to protect their personal privacy), and those who succeded in doing so and are in the public domain so I can publish two of the names:
Nikki Bacharach (http://www.associatedcontent.com/article/118875/daughter_of_burt_bacharach_and_angie.html),
Tim Whattler (http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/30/hasper130.xml&page=1)
I do hope that you, Dr. Jerry Kartzinel, issue a public apology because, if you offended another group of people the way you have offended many autistic people and their families, you would be strongly compelled by others to issue an apology.
Or do you not care?
Are we not worth it?
Are we soul-less, second class citizens to you who have no idea what you've said and have no concept of how much it hurts to be spoken of in this manner? Can you hide behind that common belief that we are oblivious automatons who have no feelings or sense of self?
I'm offended, Dr. Kartzinel. Offended that a person in your position would make such a statement and then turn around and say diagnosis of autism is the start of a journey of hope, love and faith. Offended that you would raise an autistic son and choose to run an autism clinic with this type of attitude.
At the very best, you are a hypocrite. At the very worst, you are part and parcel of the destruction of the self esteem of all of those children under your care. You are part of the reason some autistic children are killed by their caregivers and many of us are drawn to depression and suicidal thoughts later on.
I demand an apology. I'm sure other "soul less" autistic people out there would like one too.
Shame on you.
