Raise the Child You Have, Not the One You Wish You Had
Too many children with disabilities are going without a diagnosis
Posted Jun 21, 2016
One of the most difficult tasks of parenting is to accept that your child is not you, or an extension of you. From the time of birth of each child, parents cherish hopes and dreams for those children: academic success, athletic prowess, fame and fortune are all possible. And what parent has not promised herself, this child will have opportunities that I did not have? Who has not wondered, is this the child who will fulfill my unfulfilled ambitions to be the scholar or the athlete that I wanted to be, but could not?
It is challenging enough for the parent of the average child to come to grips with the fact that the child is not going to be what you dreamed she would be. She is not Einstein, and he is not the next Babe Ruth. Even more challenging is accepting that the child is not you. She doesn’t share your love for hiking; he doesn’t want to be a doctor; they want to make different choices than the ones that you made (or wish you made).
How much more difficult then to manage this task when your child is disabled in some way? Hence, there is an overwhelming desire to deny the truth of a diagnosis, or, more commonly, to refuse even to have the child evaluated for a diagnosis. Of course, no one expresses their denial in this way. Instead, they claim that they don’t want the child to be “labeled.” Or, even more fashionably, people assert that learning and psychiatric disabilities are “over diagnosed” among children.
There are a number of assumptions in these claims, assumptions that are not justified by the scientific evidence. These include assuming that a diagnosis is nothing more than the personal impressions of the professional who evaluated the child; assuming that children are routinely being diagnosed with conditions that they do not actually have; and assuming that a diagnosis is a “label” that is embarrassing, must be shunned, and can only hurt a child.
I’d like to look at these assumptions, which are not true, and offer an alternative explanation for the fear of “labeling.” The real fear is not that the child will be “labeled,” but that the parent of the child will be “labeled” as having a less than perfect child. In other words, it is nothing more than denial.
What does the diagnosis of a learning or psychiatric disability entail? Those who fear “labeling” imply or assume that the diagnosis of the disability is arbitrary; the psychologist or learning specialist meets the child and on the basis of impressions drawn from that meeting, and impressions drawn from speaking with parents and teachers, arrives at a diagnosis. The reality is that the diagnosis is usually reached by neuro-psychological testing.
Neuro-psych testing is complex and comprehensive. There are a seemingly endless array of tests to diagnose every disability and every possible variation of a disability. A diagnosis is not an “impression,” it is a 15-20 page report detailing the tests and results, explaining the child’s observed difficulties by reference to the results, and detailing an intervention plan that will be geared toward the way the individual child learns.
The second assumption is that children being “over-diagnosed” with learning and psychiatric disabilities. In other words, children are routinely receiving diagnoses that are not true. Curiously, this assumption is only made in regard to children. No one claims that adults who receive a diagnosis are being “over-diagnosed.” This is supposedly a phenomenon that is restricted to children, yet no one offers an explanation as to why “over-diagnosis” is restricted to children.
Is there any scientific evidence that developmentally normal children are receiving diagnoses for disabilities that they don’t have? I couldn’t find any evidence in the psychiatric literature, but I did find copious claims within the education literature that this phenomenon is occurring. Those claims were not backed by any empirical evidence, however.
I don’t doubt that parents can shop around for professionals willing to give a diagnosis in the absence of comprehensive testing. Comprehensive testing is extremely expensive and cannot be guaranteed to give the desired result. A brief consultation with a psychologist or education specialist may do the trick in that case. Yet that is not an example of children being diagnosed with disabilities they do not have. It is an example of choosing a diagnosis in the absence of the correct evaluation.
What about “labeling”? Is there evidence that “labeling” is harmful for children? I couldn’t find any. The question doesn’t even frame the issue correctly. Children with learning and psychiatric disabilities are already labeled: as “stupid,” “difficult,” “lazy” and “troublemakers.” A diagnosis replaces the existing labels that imply that a child is responsible for his own problems, with an explanation that changes everything.
For both the teacher, and for the child himself, there is a way to understand the difficulties that does not lay blame at the feet of the child. A diagnosis turns the “stupid” child into a child with dyslexia, and opens up a whole range of strategies for coping with the problem. A diagnosis turns the “difficult” child into a child with Asperger Syndrome, who literally does not know how to react appropriately in daily situations, and opens up a different range of strategies, not to mention generating sympathy from teachers in place of disdain.
Claims that learning and psychiatric disabilities are over-diagnosed tell us more about the parents than about the children. The reality is that all too many children with serious disabilities are not diagnosed at all, because it is too damaging to the self-esteem of parents to acknowledge that a child has a problem. They claim that they don’t want their child to be labeled, but the reality is that they don’t want to be labeled as the parent of a child with a disability.
There are legitimate reasons to resist a child’s diagnosis, but that calls for a second opinion, not a rejection of the diagnosis itself. Any parent resisting a diagnosis needs to be brutally honest with him or herself: Do I truly believe that my child does not have this disability, or am I afraid to bear the sadness that comes with this? Am I worried that my child will be labeled, or is my child already labeled as “stupid” or “lazy” or “disruptive”?
Many of us like to pretend that the children who use to be called a little “different” when we were kids, grew up to be happy, healthy adults. That was often not the case. There are many children who experienced unfathomable misery because they could not fit in and did not understand why.
While it is possible that some conditions can be over-diagnosed, it is equally if not more likely for them to be under-diagnosed. Too many children with disabilities, children who could be helped, are going without help because their parents wish the child didn’t have a disability, so they pretend that he doesn’t.
Raise the child you have, not the one you wish you had. It’s not easy, but it’s what every child deserves.