The Age of What Diagnosis Does Your Child Have
March 3, 2007 by Kristina Chew, PhD
Filed under Health
There are more children with autism today than there used to be.
True or false?
There are more children with autism today because we have a better understanding of autism, can better identify it, and therefore better diagnose it.
True or false?
There are more children with autism today, and also children with ADHD, OCD, and other child psychiatric disorders because we live in a culture that has created these sorts of labels and this is how we, today, at the beginning of the 21st century, see, name and understand the “issues” our children have.
True or false?
More than a few who are parents of autistic children see environmental and other agents as the cause of the increase in autistic children; of the “autism epidemic.” It is not the bedeviling topic of autism causation that I wish to address in this post, but the related question of the increase in childhood psychiatric disorder as noted in a February 2007 study by Danish researchers. Even more than living in the Age of Autism, or the Age of ADHD, can it be said that we live in the Age of What Diagnosis Does Your Child Have?
This question was indeed the topic of a book to be entitled “We’ve Got Issues: Childhood in the Age of Anxiety,” that New York Times columnist Judith Warner has been working on for the past three years—and that, as she writes in a March 1st column, Second Thoughts, that was not getting written. Warner’s Second Thoughts is a sort of mea culpa about her last week’s column on the death of Rebecca Riley. The four-year-old had been given large doses of psychiatric medications by her parents, who both had troubled histories of abuse and neglect. Warner notes that she had written that column with a particular “straw man” in mind, namely someone who
“……would generalize from [Rebecca's] story to say that it was emblematic of what was happening in a sick society where kids are being medicated to shut them up”
—-someone who thinks that children today are being over-medicated as a “quick fix” and, even more, over-diagnosed with a veritable alphabet soup of labels: A.D.D., O.D.D., G.A.D., O.C.D. P.D.D.. As she writes, Warner had originally planned to write “We’ve Got Issues: Childhood in the Age of Anxiety,” as a deconstruction of the “culture of pathology” that “has replaced the world of playground fights and bloody noses and kids sitting on the floor in the hallway after they’ve been kicked out of class that we all recall from our childhood.” Kids these days (this strawman argument goes) get a bunch of letters attached to them (ADHD, even PDD, et alia) rather than having to face up to the bad behaviors they should try to control. A column in last May 2006’s The Sunday Times went so far as to suggest that autism is a “trendy” diagnosis to get for a child who really is just badly behaved (due to, it is implied, bad parenting).
In her March 1st column, Warner reveals that that straw man is no one other than herself, a “naysayer” who “had no idea what it was like to parent a child with serious issues but found it easy to theorize and moralize and pontificate about the ‘abstract other.’” The issue is not that so many children today are diagnosed with a number of child psychiatric disorders, but rather, as Warner writes:
I now think that the worthwhile story to tell isn’t the one about the excesses of our era. It is rather about how, in this brave new world of diagnosis, medication, brain science, social services, educational reform, private consultants, support groups, Internet chat rooms and endless playground conversations about this or that nutritional therapy and this or that occupational therapy, parents of children with issues still find themselves so profoundly alone. With all the talk and all the therapy and the theorizing and the moralizing, we as a society are still failing them and their kids. [my emphasis added]
Why do parents of autistic children still feel that, for every “autism awareness” campaign, all those puzzle car magnets, so many books, federal legislation, etc., etc., people still respond with that silence when we say “my child’s autistic”?
Why do we feel a deep-running, even sweet, sense of recognition when someone we randomly meet says, “My child does too”?
Why, “in this brave new world of diagnosis, medication, brain science, social services, educational reform, private consultants, support groups, Internet chat rooms and endless playground conversations about this or that nutritional therapy and this or that occupational therapy,” do we still say, again and again, that autism is a mystery and a puzzle, is strange, that we just do not yet understand?
Warner ends her column with her own set of questions:
- What if children’s troublesome symptoms are not their truest form of self-expression?
- What if, in the past, it really wasn’t so great to leave “quirky” kids to tough it out on their own?
- What if recycling a watered-down version of ’60s-era radical thinking about psychiatry and the normalizing evils of mainstream society (“Mental illness is the revolt that the free organism in its total entity invents in order to live in an unbearable situation,” is how Jean-Paul Sartre once put it) isn’t the best approach to take in today’s world?
- What if the whole topic deserves a new kind of radical rethinking?
My answer to the 2nd question is “yes, it really was not so great to let a ‘quirky kid’ tough it out on their own,” and I also answer “yes” to the 4th question. Have we come as far as we can in diagnosing and labeling our children (and ourselves)—to the point that some claim that there is an epidemic of children’s mental health disorders—and is some whole other approach that is not about diagnoses and labels in order? Can there be some other way of describing, talking about, understanding who and what and how our children (and ourselves) are in all their varieties of being and experience?
I would hazard, without second thoughts, that the answer to that last question is “true.”
About what form this “other way” of describing our children might take—and what my answers to Warner’s 1st and 3rd questions might be—stay tuned.
Hi Kristina,
As I mentioned in the ‘Maintream or Not to Mainstream’ post comments, the stigma of autism and other communcication disorders is still profound. Increasing ‘awareness’ is not enough, we have to make people see how great our kids are, that they are corageous, not ’strange’. As you have written in the last few days, we as parents can get so wrapped up in preparing our children to live as adults in a world where appropriate supports are hard to come by, that we forget the little lights our children are now. If they do not conform to the perfectly behaved, polite ideal, then there is a stigma. Children and adults with these labels are held to a higher standard than NT (is that the term?) people. A little word of caution to those who watch and judge a meltdown – it can happen to anyone. Alzheimers seems a lot like autism in the older population. The radical change needed is a big change in attitude on the part of educators and society in general. Awareness campaigns have to go further. Often families feel alone because even among the ’special needs’ families, there is incredible competition – ‘my child is with autistic kids all day, we dont need to do play dates with more kids with autism’, ‘my child just has a touch of PDD’ ‘my child is fully recovered’ these are comments i used to get a lot when trying to reach out.
We all need to come together and promote the positive while working to improve quality of life for individuals with communication difficulties, whatever the dx. Anyone who could not ‘talk’ would get frustrated.
I definitely sense the “competition”—-not that people intend to communicate this, of course. Sometimes I think the notions of “hfa” and “lfa” bring this out, consciously or unconsciously. I like the notion of the autism spectrum because it suggests that there is a commonality among autistic persons, whatever their abilities of speech or academics or otherwise.
And one thing that all of us have in common is that care enough about autism—think a lot about autism—all the time. And care about what those who don’t perceive it to be!
Small glorious moment of the day was to see Charlie hop under the covers of our bed with Jim beside him and then to ask me “Read a book!” I brought him Goodnight Moon.
I couldn’t read Warner’s column because it’s on the paid section of the NYT. But I’m glad she is acknowledging that she was wrong and moving on to try to understand that there are children who cannot be expected to learn and function the same way as neurotypicals do; and that many of their parents are doing their best.
I also encountered some opinions like “we have to expect discipline the same way we do to our NT kids” amongst parents of kids in the autism spectrum. I belong to a discussion list where some parents disagreed with my opinion that I don’t always need to reprimand or suppress my child’s “acting up” in public when I know he is not hurting himself or others, or destroying property. I know my child has sensory needs and some cognitive impairments that prevent him from understanding the reason why he is supposed to “sit still” for long periods of time when, at this point, he physically can’t. He is only 3, for Christ’s sake, and I know it will be years of therapy and growing up before he is able to keep his body still for more than a few seconds. I knew he had this problem since he was a little baby.
I’d babysat my nephews and nieces many times before having my own child and I was always saying “no, you can’t do that”, and expecting them to behave. I was raised in a big family and we were tough on each other many times… So I’m not talking on the perspective of a soft, permissive person. I just had a child with special needs and I learned that a different approach would be necessary in his case. I’m getting to know him and trying to find out what is the best way to parent HIM. If I happen to have another kid who is neurotypical, I’m going to parent this other child differently.
Support-wise… I had a wonderful experience this past week that reminded me that I can find support as an autism mom in unexpected places. I belong to a small handspinners group that meets every other month (these days). We’ve been meeting since before my son Brendan was born & have supported each other through many life-phases, & have been making afghans for local hospices since losing a member to breast cancer a few years ago. At our meeting last Wednesday I spoke of the things I’ve been thinking & writing about lately concerning autism & society. The rest of my friends, some with kids, some who’ve never had kids, chimed in with their own very similar feelings & observations. I had no idea that they felt they way I did about these issues, or that they’d even been thinking of them, since no-one else is dealing with autism in their family. It was so heartening & validating to sit with these long-time friends & discover how much we still share, to feel their support for my feelings & journey. Pretty cool!
I kept looking for the answer key — darn No Child Left Behind bubble tests….