• Wed, Jun 20 2007

On being an involved autism mother

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.

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  • http://laurentius-rex.blogspot.com laurentius-rex

    A lot of forks ahead in the road at 8 or 9 or 10.

    We all know where the road paved with good intentions leads.

    Autism is for life, not just for Christmas as people will discover once this current storm has passed.

    And I think the road paved with metaphors and slogans gets a bit uncomfortable underfoot after a while as well.

    Time for action.

  • http://club166.blogspot.com/ Club 166

    I’m going to attempt to be very Kristina like here in my response-

    You go, girl!

  • http://therunman.blogspot.com jypsy
  • http://gretsblog.blogspot.com gretchen

    An article in our neighborhood paper recently stated (paraphrasing) “autism effects more children than pediatric cancer, AIDS or diabetes.” AUTISM IS NOT AN ILLNESS!! What influence does language like this have on the non-autism community? On parents of newly-diagnosed kids?

    Write on, Kristina!

  • http://compostermom.blogspot.com Daisy

    Not to be redundant, but — You go, girl! I couldn’t have said it better. You can speak for me any time.
    -another “involved” autism mom

  • Suzanne

    I’d love to stay and comment, but my (dare I say adorable, delightful and healthy) autistic child has brought me his shoes. Time for action. ;)

  • passionlessDrone

    Hello friends –

    “AUTISM IS NOT AN ILLNESS!”

    This is insane.

    We are all the sum of our biology; in the case of autism the evidence is abundant that biology is vasty different than that of non autistics.

    If someone told you that your child showed signs of brain encephalitis, you wouldn’t consider that a problem, not just ‘part of who they are’?

    Neuroinflammation in autism

    If you were told that your child had evidence of greatly increased oxidative stress and evidence of vascular abnormalities as compared to other children, you would just say, ‘That’s my Jonny! Greatly increased oxidative stress is just part of who he is!’ ?

    Altered vascular phenotype in autism: correlation with oxidative stress.

    If someone told you your child had strains of bacteria in their gut at a 40 FOLD level higher than other children, this wouldn’t cause you some type of concern?

    Real-time PCR quantitation of clostridia in feces of autistic children.

    If you were told by the doctor that the markers of your child’s immune system were significantly higher than other children’s, this wouldn’t be a cause for concern?

    Elevated cytokine levels in children with autism spectrum disorder.

    No matter how hard you might pretend that autism is comprised solely of DSM classifications, this does not change the fact that there are profound biological problems in children with autism.

    You can be a dedicated and loving parent while acknowledging the fact that being different CAN mean there is a problem.

    - pD

  • vincent

    Well written!

    An African proverb comes to mind, “When you pray. Move your feet”.

    As a personally involved Dad (and I really encourage dads to get personaly involved), “autism” awareness is gathering momentum around the country, thanks to writers like Kristina Chew and others who have taken lead roles.
    The most sincere critics of our children’s behavior have often failed to see that that they have clung to the stereotypical image of “normal” and remained uninformed, not because autism related behavior defines our children, but rather because autism unmasks an ambarassing wound in society today which crosses all socio-economic, ethnic and political boundaries.
    The autism-wound, as it is know in my house, is caused by the epidemic alienation of “different” groups from the mainstream.
    Honestly, I have discovered that behind every essay about an aut child, behind every commentary about what the autism experience is all about, lies the wounded heart of a parent longing for a normal child.
    Aut children and adults can offer us all a deeper understanding of how this longing-the autism wound-has crippled some of us emotionally in our daily lives and can then ecourage us to seek healing through awareness and acceptance.

    kristina, your efforts are to be commended!

  • http://club166blogspot.com Club 166

    Vincent,

    I agree with you that dads need to be involved. Fortunately, many are. But the point is well taken that parenting special needs children (like the parenting of “normal” children) falls disproportionately on the moms of this world.

    There are still many ways that dads can be (and are) involved, including doing what they can when they are home, making time to go to IEP meetings (essential in many cases), raising public awareness, and political advocacy.

    The one thing I have a difference of opinion with you is when you said:

    “…Honestly, I have discovered that behind every essay about an aut child, behind every commentary about what the autism experience is all about, lies the wounded heart of a parent longing for a normal child. …”

    While it is somewhat normal for a parent of a newly diagnosed child to feel overwhelmed, lost, and perhaps even disappointed about the prospect of a future for their child that is much different than what they expected, I think that most work thru this fairly quickly, coming to accept and value their child for who they are.

    Because of this, there are many non-autistic parents of autistic children whose writings are not filled with longing for a normal child.

    Joe

  • vincent

    Joe, unsure if “many” dads are involved. Perhaps we should ask the moms?

    Nonetheless, I’m glad my comment encouraged you to chime in and I hope you and I can encourage even more fathers to attend IEP meetings, support groups, and more trips to the market w/our kids.

  • http://compostermom.blogspot.com Daisy

    I couldn’t simply let this sit unanswered. My post is at this link. Edited by the blog author at 20.32 EST.

  • http://www.unclesamscabin.blogspot.com Samantha

    Hi Daisy, your link didn’t work so I tried to fix it. Hopefully this will get any interested persons to your blog post. Daisy’s open letter to RFK Jr.

  • http://maternal-instincts.blogspot.com Niksmom

    Vincent, I can vouch for Joe’s statement that many dad’s help. Niksdad is an amazing partner to me and is always willing to pick up the slack, brainstorm, attned IEP meetings, therapy sessions, Dr’s appointments, etc. All that AND he is going to school and working. Yep, he’s pretty special!

  • vincent

    Would still like more dads to step up to the plate. If you’re at the plate already, I salute ya.
    Honestly, the moms really can use the help out here.

  • vincent

    Actually, a good dads site is: fathersnetwork.org

    Nmom, just speaking as a dad knee deep in this experince. Dont want to overgeneralize, but I feel many dads have a somewhat longer period of denial about autism and its implications. I think, overall, we dads tend to focus on long term matters such as the financial callenges, while many moms respond to the challenges of the daily care. By being less involved in the daily interaction with our children/young adults us dads tend to have a somewhat longer period of denial. Love to get constructive feedback about this.

  • Kathy

    My Hubby is great with our little guy, always has been.

    Even before he was diagnosed with autism.

    When Mark was a little baby Hubby would pack up both he and our (then) four year old daughter and take them for a visit to his Mom’s or brother’s home to give me a chance to get things done around the house.

    Good fathers who are involved in their child’s life, don’t suddenly turn into bad fathers once their child is diagnosed with autism.

    Also of all the autistic fathers that I know,all are involved in their kid’s lives.

    One I know is even a stay at home dad, while his wife goes out to work.

    Generally I find more fathers ARE involved in their child’s lives these days.

    Certainly it was not the case when I was a child.
    Though fortunately for me my Dad (coming from a large Italian family of eight boys)was always a hands on father. Often cooking great pasta dishes for us all. Taking us out, and playing cricket and football in our big back yard.

    I do remember though, back then, many fathers were not as involved with their kids as was my dad.

  • http://maternal-instints.blogspot.com Niksmom

    V, thanks for the link. I’ll pass it along to Niksdad. At the risk of stereotyping along gender lines (and no offense is meant in any way! What follows is based on my personal experiences and observations from many years working in volunteer organizations with men and women)—I wonder if it is so much denial as it may be a means of feeling some greater measure of control over something that feels so overwhelmingly out of control? For example, I know Niksdad is a methodical planner and a great problem-solver. It has been tough for him to wrap his brain around some things which are, admittedly, an awful lot less black and white than he is used to (he is an engineer but has gone back to school for a career change)— like trying to figure out why our son goes through cycles of eating/not eating by mouth.

    The things you mention which a lot of dads focus on are, I think, things that they can “fix” (or plan or manage…) and feel more grounded. I know as I give Niksdad the space to do those things and he steps up to help with some of the more mundane household things, it gives me the mental breathing space to regroup, strategize, advocate, mother, etc. AND to then be able to teach Niksdad about those same things.

    I’m not feeling very articulate tonight so I wonder if I am making sense! Feel free to check out my blog site and email me from there. I’d love to continue this diaglogue further. I think you raise some very pertinent issues/questions —and I am pretty sure from what I’ve been reading on lots of *moms’* blogs, there are quite a number of dads who are fairly equal partners in parenting. But, I agree—it could always be better!

  • http://www.autismvox.com Kristina Chew, PhD

    Vincent, it’s been great to hear from you again—-am overwhelmed by your generous words. I can only say, life with Charlie has taught me that there can be a “new normal”—-if I may use an analogy, sort of like the way that one’s life is transformed when one falls in love: Things are very different (in a very positive way), and a different way of being emerges.

    Regarding dads and moms—-I prefer to let the dad in our house do the talking on this topic. Due to our circumstances, we have had a fairly traditional set-up of Jim being the main breadwinner and me, while working, attending to most of Charlie’s care. This balance is slowly shifting, in part because of where Jim is in his career and where I am in mine. Jim is now on “morning duty” with the bus; Jim made the decision to teach Charlie to ride his bike and to take off the training wheels.

    Sometimes I have wondered if my spending more time with Charlie (again, due to circumstances—-when one’s husband works in the Bronx, as did Jim for some years, and one lives in central New Jersey, the commute is long…….) has helped me “get over” some tough and sad feelings. I’ve done so much with Charlie, spent hectic afternoons rushing here and there in all sorts of weather with him, spent long and dull afternoons in the house wishing for the clock to move faster.

    We’re more 50/50 than we ever have been now—I always tell Jim that Charlie calls for “Dad” when he’s gone, and Jim tells me there’s one word Charlie keeps saying when I am not around.

  • vincent

    Ladies, thnx for the insight!

    Good to see that I’m in such great (Daddy)company.

    Kristina, your family rocks!

    I guess I’ll end on this note, THE BRAVEST ARE SURELY THOSE WHO HAVE THE CLEAREST VISION OF WHAT LIES BEFORE THEM. GLORY AND DANGER ALIKE AND YET, NOTWITHSTANDING, GO OVER TO MEET IT”
    Never surrender.

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