STDL and autism: Are self-advocates part of discussion?

From Targeting Autism, a project and blog addressing library service to patrons with autism, I learned that Kate Niehoff, program and outreach coordinator with the Schaumburg Township District Library (STDL) in Schaumburg, Ill. will be part of a panel discussion that focuses on programs for adult patrons on the autism spectrum.

The panel discussion features the following identified participants: “Representatives from STDL’s community partners, including the local school district, community college, autism resource center, and an involved parent of an adult son with autism.” These stakeholders will discuss “the specific needs of the ASD community and how public libraries across the state can help fill some of the current gaps in service.”

My thanks to Niehoff and STDL for addressing library service to patrons on the autism spectrum. I appreciate the attention paid by STDL to this library-service population.

As a library professional who is on the autism spectrum, I wish to offer two points for consideration by Niehoff and STDL. First, I noted among stakeholders participating in the panel discussion, there’s no mention of an autistic self-advocate. While the people you cite can provide valuable insights, those people who are actually on the spectrum are too-frequently left out of discussions.

I recommend an essay by John Elder Robison in which he explains, “Parents, family members, guardians, and professionals have a place at the table, but let’s recognize that it’s the autistic people’s table, and parents, friends and helpers are the guests, counselors, and advisers, not the leaders.”

My second point addresses Targeting Autism’s headline reference to “high-functioning” autism and Asperger’s Syndrome.

Be aware that use of “functioning” labels is controversial in the autism community. Such labeling sets expectations (either “high” or “low”) and assumes that people occupy clear-cut positions along the autism continuum.

Labels can interfere with recognition of a person’s potential if they are assumed to be “low” functioning, while a person perceived as “high” functioning may be denied understanding or support because their challenges are presumed to be non-existent or trivial.