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When Disability Is Defined by Behavior, Outcome Measures Should Not Promote “Passing”
“Many disabilities are diagnosed through biomarkers. Others can only be identified via behavior. Particularly in the latter context, clinicians and researchers often seek specialized instruments to assess service-provision outcomes. Measures are not neutral, however. They carry their creators’ value judgments” (Ne'eman, 2021).
Unfortunately this is all too common with ADHD diagnoses.
We supported a family whose older son was diagnosed very easily. The doctor prescribed medication without issue and referred to additional supports.
When the same family asked for an evaluation for their daughter the following year, the doctor told them he would not prescribe her medication, and that their struggles were caused by a “parenting” issue.
Apparently that doctor forgot that ADHD has a 75% heritability rate, meaning it is extremely common in families. ADHD often presents much differently in girls than in boys.
This doctor must have been very out of date with his ADHD research because, while ADHD was long ago believed to impact only boys, that has long since been disproven.
Clinicians must set their personal biases aside and make recommendations based on the best evidence and not on their opinions or assumptions. They need to keep up to date on the medicine they are practicing, or refer to someone who is more knowledgeable.
“In some conditions defined by behavior, a disturbing trend has emerged: researchers, clinicians, and paraprofessionals are using measures that prioritize reducing diagnostic traits that are neither harmful nor personally distressing, defining typical appearance as the goal of service provision.”
Oh my word, yes. Unfortunately this is much too common.
Treatment must be focused on the individual, what *they* want, and supporting their improved quality of life.
Treatment should never be about making the lives of others easier, and it most certainly should never be about trying to make someone appear as “normal” as possible.
The goal is not conformity, masking, nor assimilation - all of which have been proven harmful to people with disabilities. The goal must be accommodation, appropriate supports, and meeting an individual’s needs.
As Ari Ne’eman writes,
“Such thinking ignores the stress that passing for normal places on people with disabilities and fails to consider the ethical dimensions of behavior modification in response to stigma” (Ne'eman, 2021).
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