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Disorderism: How to Make Sure People See Your Child and Not a Diagnosis

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For many mothers and fathers, the moment a child is diagnosed with a developmental disorder comes as a relief. The diagnosis can serve as validation for the parent’s intuition that something has been amiss. The label also brings additional benefit: now there are things you can do to support your child’s needs—and in many cases, insurance will help pay for treatment.

But a label can also be an impediment to your child securing the individualized attention and services she needs. This is a rarely discussed downside of labels: learning of the diagnosis, adults in a child’s life lower their expectations, placing an invisible ceiling on the child’s potential. I call this “disorderism.”

I often see it in the educational system, which is entrusted with providing essential services for children with special needs. There, labels can influence expectations, because disorders are thought to be limiting. Undoubtedly well intentioned, professionals are trained in our culture’s medical model view of disability: where developmental differences are equated with deficiencies. Under a disability model, children are often pigeonholed into stereotypes while strength-based relationship models bring hope and emphasize each individual’s potential.

I share this observation not to indict professionals or administrators, but to raise awareness about how a diagnosis can invisibly influence the important decisions others make for your child: Here are some things to consider as you guide others to support your child in a strength-based relationship approach.

  1. Professionals assume that behaviors/traits are stable and caused by the disorder. “This is common for children with autism” (or another diagnosis), is a comment I have heard at many IEP’s. While the intent might be to reassure parents, so many tell me that this actually feels dismissive. The fact is that too many individual variations within autism and other developmental disorders exist to render generalizations useful. These statements undervalue a child’s individuality.
  2. A child’s low score on cognitive testing makes educators lower their expectations. “Below-average cognitive function” is a particularly damaging label, because traditional IQ test often underestimate intelligence in the special needs population, as they were designed for neurotypical children. A child may actually know the answer to a test question, but be unable to show the evaluator verbally. Yet professionals might use the resulting inaccurate score to make very important decisions. The label “cognitive delay” reduces expectations, resulting in interactions and programs that are not sufficiently intellectually challenging.
  3. A label influences decision makers’ ideas about what educational environments are appropriate for children. Preconceived ideas about the trajectory of learning for children with certain diagnoses can tip the scale in favor of moving children away from mainstream classrooms and into special- education classes or schools. “He’s doing okay in his current grade,” a teacher might say, “but in the future, he will most likely fall behind in a mainstream classroom.” While this may be true for some children, such negative predictions are a hallmark of disorderism. Educators should view each child as an individual, not based on their past experience with other children of the same diagnosis.4. If professionals don’t observe capacities in a child firsthand, they question parents’ reports that a child can do these things away from the clinic or school. When a child’s capacities are influenced by a label, seeing can mean believing. But what if a child only feels comfortable doing certain things with those he trusts most? It is not uncommon for neurodiverse children to take certain risks and try new things when they are with their trusted parents and caregivers.

To be sure, diagnostic labels serve a purpose. We need them to identify, fund, and support all children with special developmental, emotional or behavioral needs. What’s important is for teachers and professionals to presume competence, to see each child not as a diagnosis but as an individual, a unique and incredible human, with unlimited potential.

 

 

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