In the June 19th Huffington Post, Robert Kennedy, Jr., equates the criticism of mothers of autistic children who, like Katie Wright, have chosen chelation as a treatment and who believe that thimerasol in vaccines causes autism, with those “voices that once blamed autism on ‘bad parenting,’ and ‘uninvolved’ moms.” Once mothers were held accountable for being cold “refrigerator mothers” whose emotional reserve and even withdrawal from their children cause them to become autistic—-and now, writes Kennedy, reflecting on the over-publicized family feud between autism mother Wright and her parents and Autism Speaks co-founders, Bob and Suzanne Wright, scorn is being heaped upon some mothers of some autistic children for being “too involved.”
Mr. Kennedy, welcome to the world of Autism Motherhood or (lest I seem to exhibit some preference for my own gender) Autism Parenthood. A world where you are d****d if you do and d****d if you don’t. Yes, I want, I need, to take my child to the grocery store to practice essential life and social skills. Yes, I am trying to teach him not to run furiously up and down the aisles and warble. Yes, I do not like it that people either stare or turn their gazes away and ignore us. And even as much as it might be nice to go grocery shopping and just look for the apples and the noodles—instead of feeling as I so often do when out in public with my son, that just for him to be visible and in the community is an implicit political statement, a sign of my daily autism activism—-no matter what my son does, I want people to accept him as he is, different, autistic, Charlie. I can just let him be (and I tend to, more and more). And if I run over and say “shhhhh” or ask him questions to ease him off the warbling (“what store are we in?”), and if—because he knows full well I am trying to redirect his “inappropriate behavior”—-and he yells louder or (as he used to do when younger) has a tantrum, people look at me and say “oh, he doesn’t bother me” or “just let him be.” People chide an autism mother when she tries too hard, and when she lets go.
Being an autism mother, or father—a parent—-is like being pregnant. You and your child are public property to comment upon and inquire about.
I recoginze that my tone is getting somewhat impassioned here; goes with the territory. Nonetheless, while it is the case that my love for my son, my determination to do my best by him, and my advocacy are on a par with the mothers you mention, I am not one of “these women” who you refer to. I am “highly educated”; I do not see why you have to go out of your way to point out that “these women,” the “the anti-Thimerosal activists,” are: Why would they not be? Of course they are “doctors, nurses, schoolteachers, pharmacists,” and so forth. While many autism mothers are SAHM—some by choice, some by necessity (daycare for autistic children is unknown outside of individual arrangements) many of us work, full-time even. My line of work is education: I am a classicist, a professor of classics at a small college in Jersey City, New Jersey—–yes, in that state, which has the highest prevalence rate (1 in 94) of autism in children, and in which a school in northern New Jersey met tonight to discuss options for testing for environmental toxins, as 14 out of 39 children who were born to teachers since 1997 who taught at this scool all have autism or learning disabilities. (On my commute to work on this hot June morning, on Route 1 & 9 North and over the Pulaski Skyway, I could not avoid smelling varieties of garbage.) I teach Latin, I teach classical Greek, I teach Socrates’ “know thyself.”
Mr. Kennedy, I thank you for stepping in and noting how autism mothers in particular are “routinely dismissed as irrational, hysterical, or as a newspaper editor told me last week, ‘desperate to find the reason for their children’s illnesses,’ and therefore, overwrought and disconnected.” I don’t know how people go about depicting me (though my students’ assessment of me can be found here); from reading my posts here on Autism Vox or from my weblog Autismland in which I chronicled our life with Charlie, it is likely that evidence may be found of me being “overwrought,” at times “irrational,” but never (as far as I can tell) “‘desperate to find the reason for [my child's] illnesses.’”
First, autism is not an illness. It is a neurodevelopmental disability; it is a neurological difference. Autism is a spectrum; autism is a list of diagnostic criteria; autism is the word for what my son has; whatever autism is, I am neither “desperate” generally nor am I “desperate to find the reason” for my son being autistic. My son’s brain was not destroyed by some “brain-killing poison”: In Charlie’s ultrasound picture that I love to look out, there he is already with his big head and big eyes and fingers as long as his palms.
“Screaming, head-banging, biting and uncontrolled aggression, and ….. the agonizing pain of gastrointestinal inflammation”: Kennedy lists these as the “stereotypical behavior” that 5-year-old Christian Wright (who is also “no longer toilet trained”) now engages in after receiving “Thimerosal-laced vaccines” at the age of 2 1/2; prior to this “he had 1,000 words, was toilet-trained, and enjoyed excellent social relations with his brother and others.” A March 28th post in the Huffington Post by David Kirby noted that Christian Wright’s regression due to receiving a vaccine occurred at the somewhat younger age of 2 months old”; Kirby quotes Katie Wright herself:
On Tuesday Christian’s mom, Katie, posted an entry on Yahoo’s EOH List (named after my book, “Evidence of Harm” at www.groups.yahoo.com/group/EOHarm) that minced not a word:
“I believe that Christian’s regression and subsequent autism was the result of receiving 6 vaccines during 1 office visit at 2 months of age,” she wrote. “He screamed for 12 hours and had a 104 degree fever nearly the entire time. His vaccines contained thimerosal,” the mercury-based preservative.
It seems that, despite Christian receiving the 6 vaccines that caused his “regression and subsequent autism” at the age of 2 months, he then continued to develop “1,000 words,” was “toilet-trained,” and “enjoyed excellent social relations with his brother and others” and, as Kennedy writes, “exceeded all milestones.” As Kennedy also writes, Christian then received (another?) “Thimerasol-laced vaccine” and that (as far as one can piece together this narrative) led to him being in his current state. What is not clear, from Kirby’s or Kennedy’s post, is when Christian began to undergo chelation (before, during, after the Autism Every Day video)?
At one point in the video, Katie Wright stood with her son in front of a public school building in New York; she expressed her sorrow that he would not be able to attend this school. One presumes that he has been in some educational program and it would be helpful to know how his education, in combination with any other treatments (experimental and otherwise), have helped Christian to make the gains that his mother mentions. As my own son has gotten older, Charlie’s education has become more and more the focus as far as helping him learn skills—just learn, really—that will help him throughout his life: “Screaming, head-banging, biting and uncontrolled aggression”—-the “stereotypical behavior” that Kennedy says was caused in Christian due to “Thimerasol-laced vaccines”—-my son has been through all of those and two years of teaching by well-trained, well-supervised teachers have helped him to learn not to do these. (And, too, to learn—very slowly—to let us know if he has something like “the agonizing pain of gastrointestinal inflammation.”)
I was at a meeting of parents of autistic children in my school district tonight. A well-known consultant spoke about transitions and inclusion; she took the “long long view”: When your child is 8, 9, 10 years old, it is not at all too early to start to think about what will happen when your child is 21. (Indeed: Earlier today I had been to Jim’s and my dentist, whose 21-year-old autistic son will soon graduate from the school he has been at for so long; between the tartar scraping and the polishing, the dentist explained the difficulties of arranging transportation for his son to and from the center he will be attending come the summer. We both agreed: Before I know it, Charlie will be 21, too.) Start early—focus on strengths—use weaknesses to develop goals—-include the student, include the family, I heard tonight. There was talk of transitioning to middle school; there was talk about jobs and the skills needed and how one might start teaching these now; there was talk—-that left me with a sad thud in my stomach as I thought of Benjy Heil—about how to help a child who is lost.
The parents, mostly mothers, were involved. They asked questions about the oversight of the program, how decisions were made about curricula and the pace of teaching; they challenged the speaker about her views on inclusion. They stayed afterwards to ask more questions and tracked down handouts.
I got back just a few minutes before Charlie’s bedtime. Jim had come home early on the train and took Charlie on a bike ride over hill and dale into the next town—-Charlie has had bouts of deep anxiety for the past week, and we have been thinking this is in part from his teachers’ packing up the classroom and preparing to move things to a different school for the summer school program. He must remember how, a year ago, the teachers in the private autism school he attended packed up the school in preparation for it closing its doors forever: Is Charlie, despite everything we tell him, thinking that this is it and therefore feeling, as he more than has the right to, in Kennedy’s words, “overwrought and disconnected”; even “involved”?
I should rather say, this is one connecting kid and my being an involved mother has had some part in this. And being so involved, while I appreciate that Robert Kennedy Jr. has stepped in to speak out for autism mothers, I can speak for myself (has not Katie Wright been speaking for herself?) just as we are teaching Charlie to do more and more everyday.