Tuesday, July 5, 2016

Labels stick: The harmful impact of mislabeling children

In recent times, diagnosing ourselves and others has become commonplace. How often have you heard someone randomly labeled as "bipolar" just because of mood swings? Or presumed to have ADHD if they keep losing their keys?

What is it about labels that make them so inherently appealing? Why do we throw out psychiatric terms, make pronouncements about someone's functioning, and offer lay diagnoses without background knowledge or training?

But it feels good...


It can be reassuring to summarize symptoms, to wrap up information in a neat package, to proclaim that we have an answer. It feels good to think we have figured it all out. The problem is... this just might minimize, devalue, and inaccurately pigeonhole someone - and cause immeasurable harm. Especially when it comes from an authority figure.

What happens in school...


Children can be difficult. They try our patience. They drive teachers crazy. Whether due to frustration, ignorance, or genuine concern, children receive labels from those who lack the training or certification to diagnose them. Popular diagnoses come and go - oppositional-defiant, ADHD, "on the spectrum..." When children raise trouble, the problem is simplified if it is reduced to a disorder to be treated, rather than a behavior to be managed in the classroom.


Mental health diagnoses exist for a reason - to convey specific and presumably accurate information, carefully chosen by professionals trained and licensed to make these determinations. But when words are tossed about carelessly, the long-term damage of such labeling is rarely considered. Many teachers or other professionals who casually mention diagnostic terms to parents may not appreciate how these words become imprinted in parents' hearts and minds - even long after such diagnoses may have been discounted.

Case example 1: 
A parent of Jonah,* a 6-y/o gifted boy, was pulled aside by his first grade teacher. She shared her concerns that he was well-behaved, but often preferred to play by himself, building lego castles, drawing, even writing elaborate stories. While she marveled at his academic strengths, and claimed that he interacted well when he was "forced" to socialize, she wondered if he might have some Asperger's traits, and suggested that the parent keep an eye out for this. 
Gifted children are often misdiagnosed. After speaking with the parent, I was able to reassure her that his behaviors sounded typical for a gifted child, and that his teacher was not in a position to diagnose him.

Case example 2: 
Derek,* at age 7, was in occupational therapy due to fine motor skill deficits. He was pulled out of class once a week with several other students, one of whom was a close friend. The pull-out was a fun experience, and he and his friend had a great time together. At an IEP meeting, the occupational therapist suggested to the parents that he might have ADHD because he seemed so active and distractible, despite no other corroborating evidence of ADHD behavior in any other settings. 
This occupational therapist could not appreciate two rambunctious seven-year-old boys having fun together. Unable to contain their energy, he assumed that there must be a problem. So he interjected his opinion, which was both unfounded, and quite distressing to the parents. After reassurance from the child's teacher, pediatrician, and school psychologist, the parents were able to relax and realize that the therapist was off-base in his claims. But years later, they still worried and wondered if they were missing something, ever alert to concerns about a problem that did not exist.

The problem with labels 


Labels follow children throughout school, even when they are not verified. Rumors of oppositional traits, for example, may be passed from teacher to teacher, affecting expectations about the child each year in school. Parents may feel devastated to learn of potential problems that do not actually exist. Even when a child's behavior, learning problems or psychological functioning warrant a diagnosis from a trained professional, there are sensitive and useful methods for sharing that information with the family. No child (or adult) is their diagnosis; it is critical to support recognition of the whole children with all of his or her strengths, abilities, quirks, struggles and uniqueness.

The language we use matters. Let's be careful with how we label others. We teach our children to refrain from name-calling and bullying. We teach them to be culturally sensitive. We also need to model restraint when it comes to labeling and diagnosing the behaviors of others.

* Names have been changed for reasons of confidentiality

13 comments:

  1. We are going through this right now with my daughter (13) who was diagnosed as gifted with Aspergers in 2nd grade. In 4th grade we moved to a different state where the teachers actually questioned the Aspie label. Now my very self-conscious teen is also questioning it. We are too after she tested sky-high on the reading part of the ACT and she has a solid group of friends. Though shy, she is doing "regular" teen things...texting, shunning her parents (lol), seeking independence, etc. Her diagnosing psych said children can develop skills to function typically. We are still wondering if it was a misdiagnosis.

    ReplyDelete
    Replies
    1. Unknown, Your situation is unfortunate, as you are left questioning what the "true" answer is. For a while, Aspergers was sort of the "hot" diagnosis, and a lot of kids were given this label. This is not to say that it is not necessarily warranted for some children. But it sounds like your daughter might not fit the typical diagnosis, or might benefit from another evaluation. Good luck.

      Delete
    2. Thank you for your reply. Trying to look objectively at this situation...my daughter did receive OT services for sensory issues as a preschooler. I think the first psychologist focused more on this in her evaluation (and my daughter still has sensory issues). But the language and social deficits are not there. She has had some help with social skills but has had zero intervention for reading/language. It's very puzzling to us. Now I understand that a kid with sensory needs is not necessarily on the spectrum. Because I think it's important for the evaluator to have solid knowledge of gifted kids, I'very inquired about a reevaluation. The only psych I've found that fits the bill is out-of-network and $1500. So we are left thinking our daughter just doesn't fit the label.

      Delete
    3. By the way, when (would you say) was Aspergers considered the "hot" diagnosis? My daughter was diagnosed about 5.5 years ago.

      Delete
    4. Robin, i agree that understanding the complexities of giftedness makes a difference, and when there are sensory issues, it can confuse the issue. I would think that Aspergers was a "hot" diagnosis over the past five years or so, but that's just an opinion, not definitive. Either way, hopefully you and your family can sort this out over time. Your daughter is the unique person she is - regardless of any diagnosis. Wishing you all the best.

      Delete
  2. Thank you , Gail, for linking your readers to the SENG Misdiagnosis Initiative within your article. We offer many articles, videos, and free downloadable brochures for printing and sharing with health professionals, educators, and parent groups. Look for the new second edition of the book "Misdiagnosis & Dual Diagnosis of Gifted Children & Adults" coming out later this year.

    ReplyDelete
    Replies
    1. Thanks, Marianne. The Misdiagnosis Initiative is SOOO important. All parents and professionals involved with gifted children should be aware of it!

      Delete
  3. I too was mislabeled aspergers oCD ODD bipolar and depressed now of which I had I at 15 taught myself international human rights humanitarian criminal refugee law the hard way organizing protests and lobbies I know that subject in all six UN languages Arabic Chinese English French Russian Spanish as well as in Portuguese I was diagnosed with aspergers for studying geography yet these idiots cannot name the capital of Burkina Faso (Ouagadougou) in addition to the aforementioned yet enforcing responsibility to protect the Geneva conventions and the Universal Declaration of Human Rights and the US Bill of Rights is far more important I even published several books such as May 7 about 100 years of future economic political social and human rights development of Africa I was involved in multiple political advocacy Amnesty International enforcing the Universal Declaration of Human Rights (which AI won the Nobel Peace Prize in 1977) students for peace to end's Iran's nuclear weapons development stop cluster munitions from being used I was involved in the movement to stop genocide (the reason I learned international humanitarian law) I taught myself Afrikaans Xhosa and Zulu to work with HIV AIDs children in South Africa (with Parliament HUman Rights Commission and the Constitutional Court) I learned Chichewa for my Malawian girlfriend (who BTW was also misdiagnosed) I love to the psychogolists photograph like her or make clothes like her psychologist Is the number one profession I hate the most

    ReplyDelete
    Replies
    1. Roman, I'm having a little trouble following you... And I'm not sure what profession it is that you "hate." However, it is unfortunate that you feel hate toward any one entire profession. There are good and helpful people in most professions, and some who are not. Sorry if you felt betrayed by any one person in particular.

      Delete
    2. Can you point me to any research on the effects of labeling children as Gifted and Talented (misdiagnosed or accurately diagnosed)?

      Delete
    3. Unknown, I don't have references on any research on this question. Clearly, children are effected by HOW they are told about their giftedness, and the reactions of those in their environment continue to play a part. I wrote a blog post a while back about sharing this information with your child: http://giftedchallenges.blogspot.com/2013/06/what-to-say-to-your-gifted-childabout.html.

      If you or others have references about this, please pass this along. Thanks.

      Delete
  4. We are going through something similar with my son (6). He is going into first grade this year after a awful Kindergarten experience. He is a lovable and rambunctious little boy. After a full year of "behavior issues" I finally had the school evaluate him. His IQ came back in the superior range. I then took him to an outside psychologist who diagnosed him with ADHD based on reading the school's evaluation and meeting him with for 30 minutes. While he may have ADHD I am still so unsure and that diagnosis seems so "off" to me. I dont see that behavior at home. He just started a karate program and I don't see that there either. If he is being engaged he will stay engaged. Unfortunately NY doesn't mandate gifted and talented classes (not even sure if he would classify with his score if they did) so the only option we had to get him what he needs (smaller class room size and a little curriculum differentiation) is to go with the ADHD diagnosis so we could get an IEP.

    ReplyDelete
    Replies
    1. Anonymous, I can understand why you are frustrated. It is so hard to sort out what might be going on - especially with the combination of factors, such as boredom with school and just being a boy. Psychologists are trained to diagnose, although that does not mean they always get it right. It is unusual for a psychologist to meet with a child for only 30 minutes and then offer a diagnosis. It might mean that the psychologist was very rushed, not giving your child the attention he deserved, or that the ADHD was so apparent to the psychologist that he/she was very clear about it. What might be helpful, if you can afford it, would be to get a second opinion from another psychologist - one who specializes in both ADHD and giftedness, so that there would be less likelihood of misdiagnosis. Also, he might test higher in terms of his IQ if he is tested again at a later age. So you might want to consider retesting in a year to see if he would qualify for gifted services. Good luck.

      Delete