“A tone of hopelessness”: Article on Autism Every Day in the New York Times
January 20, 2007 by Kristina Chew, PhD
Filed under Health
From Hard-Hitting Look at Autism Is Being Shown at Sundance, an article in the January 21st New York Times by Abigail Sullivan Moore about the new version of the Autism Every Day film that is being shown at the Sundance Film Festival.
For Sundance, the piece was expanded to 44 minutes, still focusing on more impaired children. They are the ones, as [Autism Speaks spokesperson Alison] Singer characterizes them, “who don’t make enough progress to be mainstreamed, who continue to struggle, who still have such challenging behaviors.”
“That’s why we made this film, to tell their stories,” she said.
That focus has angered some families. Kristina Chew, a mother of an autistic child who writes two blogs about the disorder, said the initial version of the documentary “portrayed a tone of hopelessness.”
While the filmmakers capture hope, love and determination, the documentary also reveals the unrelenting stress and occasional despair in rearing children with autism. In one scene, Michele Iallonardi of Hauppauge, a mother of three boys with autism, says: “You’re stressed that your kid’s not eating broccoli. My kid is eating baby food for the past three years. We have had feeding therapy for three years.” Mrs. Iallonardi also describes the debt the family has incurred for her sons’ therapies.
As I write on Autismland, my son Charlie (who is 9 years old, the same age as Singer’s daughter Jodie and as the son of Lauren Thierry, co-producer and director of the film), has not made “enough progress to be mainstreamed“; he continues “to struggle”; and he still has “challenging behaviors,” as described in this post from last Monday, Proteus in Autismland. Nonetheless, as I wrote in my post Tragedy, comedy, epic and autism every day: Sunt lacrimae rerum:
Life with autism is a lot more than suffering; ours has plenty of moments of laughter, joy and fun. It is a good life.
And it is a life of hope, thanks to a boy named Charlie.
Wow, you’re in the New York Times!
I am happy that Autism Every Day portrays the hard realities of life for and with children with more severe autism. Such children will never receive the help they need if their complete stories are not told.
As the sister of a 51-year-old autistic woman, I am happy to hear that a film that depicts something of the ordeal my family experienced over many years has been made. As playwright Arthur Miller wrote, “Attention must be paid”. While rose-colored views of people with autism is all well and good, very few who haven’t lived what my family and I lived can imagine or appreciate the sheer despair and chaos that my sister’s autism caused. “A tone of hopelessness”? Well, Ms. Chew, my parents lived their entire lives with no sense of hope for my sister, and pretending such situations don’t still exist is both unrealistic and lacking in empathy.
Thanks so much for commenting here—-I really appreciate it, and I’ve a lot to learn. I try hard not to present an overly “rise-colored” view of our life with my son Charlie; it would be dishonest not to say that there have been plenty of moments of “sheer despair and chaos.” Yet I think that, thanks to learning from the experiences of your familiy and so many others now, we know a lot more and can (one hopes) use that knowledge to makes things better, certainly than they were in the past; Arthur Miller himself had a child with Down’s Syndrome (in 1962) who was institutionalized immediately, after which Miller seldom or never visited him (source).
Thank you again. How is your sister now?
“While rose-colored views of people with autism is all well and good,”
what? hu?
if that were true that would be awesome!
but I don’t think that’s true. It is hard living with my son. I understand the chaos, but I think what Christina is saying is that you have to be very careful what you present to the media. If we present nothing but the screaming and the chaos, or our whinings, the public might have a tendency not to try to get to know these beautiful people.
life with autistic children is tough, but don’t we want acceptance too??
check this out http://unstrange.com/korea.html
An autism diagnosis is a frightening diagnosis for a parent to receive for their child. Such a diagnosis will in many cases mean a life of hardship for a family and eventually institutionalization for a severely autistic child. It happens.
I have, as a lawyer, advocated on behalf of autistic children who have been removed from their neighborhood school in handcuffs. I have also advocated on behalf of an autistic youth whose parents were unable to care for him at home, and who could no longer be cared for in group homes and was sent to live on the grounds of a youth correctional facility before space was found for him at the Spurwink facility in Maine. I have with a young man’s father, visited him at a mental health care facility where he resided along with patients with a variety of mental health conditions.
These are facts. Parents with newly diagnosed autistic children should be aware of these realities not just the glossed over autism is beautiful version of reality. With such knowledge they will know that they have to fight and advocate for their children to ensure they have the best life possible.
Public services will not be committed to helping severely autistic children unless the parents of those children make sure their stories are known.
Those are terrible, yet powerful, stories—thank you so much for writing about them here, and about the important work that you do. Advocating for my son Charlie has been the biggest task I have ever undertaken, and yet one that has been the easiest to embrace and to make a life’s work of.
And we’ve all a lot more work to do to get these stories heard and push for real changes.