This is a opinion/personal response to this recent article on NOS magazine on the adversarial exchange that took place between autistic self advocates and parents of autistic children at a recent Interagency Autism Coordinating Committee meeting which is a governmental body that sets the direction on autism research. The clash between autistic adults and parents at this meeting is a reminder of the ongoing divide that continues to exist in our community. From reading this article, I am saddened that there are some parents in our community that can't fathom the idea of self advocacy or the idea that autistic people can attend and sit on committees and offer their opinions . I know I am biased from writing this post since I am writing from the perspective of a self advocate, but I want to offer my two cents at the outrageousness of this meeting and the direction the Interagency Autism Coordinating Committee. I also want to highlight some of the postives like how self advocates John Elder Robison and Sam Crane and nonautistic researcher Edlyn Pena came up with excellent responses and defended neurodiversity and its principles of rights and humanity for all autistics.
I am outraged that a prominent governmental agency would allow autism warrior parents such as Jill Escher and Alison Singer to continue to discount the voices of autistic adults like myself. Both of these women are known to hold anti-neurodiverse sentiments on autism and think that the only legitimate autism cases are only those who are nonverbal and have significant support needs. For instance, Escher made a controversial autism matrix this past April that reinforces functioning labels while Singer made a disturbing comment on camera of committing a murder suicide with her high support autistic daughter in earshot of her comment. Despite the controversial histories of these mothers, they continue to hold high positions as executive directors for various autism organizations. Perhaps what is even more reprehensible, is that Escher and Singer continue to make assumptions about autistic ability and support needs. They believe that autistic people who can sit in a meeting and speak their opinions must not have medical problems such as epilepsy and G.I. issues or not need support etc. Both Escher and Singer also assume that those with "intense support needs" also have co-occuring intellectual disabilities and therefore cannot understand the logistics of an official governmental meeting discussing research priorities. These autism warrior moms think they are advocating for the good of autistic people but in reality I feel they are furthering their own selfish agendas.
On the positive side, I applaud self advocates John Elder Robison and Sam Crane for defending the autistic population and to try to establish unity with autism parents. The humility of Robison's comment about the duty he and other self advocates on the board of the IACC have to ensure that autistics of varying levels of support have the chance to live a great quality of life. Of all the "high profile" self advocates out there, I admire John Elder Robison because he doesn't attempt to represent only one side of the spectrum (which is a common among those diagnosed with "Aspergers") and actually cares about autistics who are significantly more impacted than he is. When we do autism advocacy, we often consider the whole entire spectrum which includes those who are nonverbal and requires significant supports in order to live in the community. This is also what Sam Crane said about the need to presume competence in those who can't speak verbally and giving them a seat at the table at policy meetings. Self advocates exist because we believe that all autistic people of all abilities are deserving of rights and supports that will optimize their quality of life. Support shouldn't be a luxury available to only a select few but a necessity for all individuals on the autistic spectrum. This is a standard that I attempt to live by whenever I advocate for autism.
Another positive thing that came out from this meeting is from autism researcher Edlyn Pena from Cal Lutheran University. She made two excellent points about diversifying the board of the IACC. She advocated that we need more autistics who type to communicate to be on the board of the IACC because they are underrepresented in all autism conversations. She also made a comment of getting more autistic voices of color on the board, since autistic people of color and their families are relatively absent on boards of autism and other disability organizations. As a person of color on the autism spectrum, I applaud Pena's statement since she is one of the few that is keenly aware of the lack of racial diversity in the autism community.
The relative absence of self advocates (only three out of the 31 board members are autistic) on the board on prominent governmental boards such as the IACC that affect research priorities shows why autism research does not align with the interests and desires of autistic people. It is still sad that parents who have bigoted views on autism are still permitted to express them which causes a division for our whole community. I am not saying parent involvement in the autism advocacy movement is not important but it should be secondary and alongside autistic self advocates. We need more advocates from different backgrounds, abilities and support levels to be on boards on prominent autism organizations to offer their opinions about policy issues that affect our day to day lives. There is the saying among autistic self advocates that "nothing about us without us."