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Push for profound autism diagnosis steers focus away from more important conversations

What’s in a label?

Humans have been labeling things essentially as long as we’ve had language. Labeling aids our memory and helps us categorize based on similarities and differences and avoid things that might be dangerous to us.

When we start labeling people, these benefits can have some less benign consequences.

The disability world includes its fair share of labels. Some of those labels are offensive and have no place in our modern vocabulary. But many others serve as official diagnoses with the intent of helping define the services and supports that might be needed as the result of the characteristics people might share.

Labels and diagnoses were a hot topic back in 2013 when the newly released DSM-V manual for mental disorders removed the old Asperger’s Syndrome label. Asperger’s was previously a diagnosis used to describe autistic-like behaviors in people with “normal” intelligence and language development. Some professionals alternatively called this “high-functioning autism.”

In the new manual, these distinctions were eliminated, and all diagnoses related to autism were combined under one umbrella label of autism spectrum disorder.

Now there is a push to reverse that combination and add a new diagnosis of “profound autism.” Proponents of this initiative cite the need to differentiate the needs of people who need 24-hour care and don’t communicate verbally from those who are “mildly affected” by autism. The argument is that the face and voice of autism currently comes from advocates with higher levels of language development or celebrities such as Elon MusK and Dan Aykroyd. Some say that autistic folks who are not as successful and need more support are neglected by funding and supportive services as a result.

However, most autism advocates see this return to multiple diagnoses as a huge step backward. Old diagnostic distinctions and “functioning labels” (such as high-functioning or low-functioning autism) are harmful and are frequently used as excuses for denying civil rights to people who are deemed “low-functioning.”

One of the most problematic aspects of the push for the profound autism label is that it assumes that people within a single diagnosis require access to the same supports. No label can capture the complexities and uniqueness of any human being. Pretending that a “profound” label would tell professionals anything about a specific person’s needs or strengths is a faulty premise.

In the world of labels, we are looking for similarities. Proponents of the single diagnosis believe that all people with autism are alike in many important ways. This similarity is a strength that can give voice to those who may not speak and power to the essential call for better inclusion and autism support systems.

A new label does nothing to increase access to those supports. The push for the profound autism diagnosis steers the focus away from the more important conversations of inclusion, public policy and other disability advocacy initiatives. These initiatives benefit all people with autism, not one distinct group.

Check out the Autistic Self-Advocacy Network website at autisticadvocacy.org for a more in-depth analysis of this conversation.

Tara Kiene is president/CEO of Community Connections Inc.