Last week, while at a meeting of the Adult Services Subcommittee, a visitor to our meeting said something about "Self-direction," to which I added, "And self-advocacy."
Another one of the subcommittee members, the woman sitting to my right, immediately retorted, "Don't exclude nonverbal people with autism!" This individual is the mother of an adult non-speaking Autistic son with aggressive maladaptive behaviors.
When I responded with, "Excuse me, I didn't say anything about excluding nonverbal people," she continued to say that "Not one nonverbal person is in this room," to which I replied, "But they are welcome to come."
The mother nodded. "They are welcome to come, but you won't see any of them here. They're not represented here. I didn't bring my son so you wouldn't get bruised."
I raised an eyebrow. "Do you mean that literally?"
"If my son were here," said the mother, "he would hurt you. He is very aggressive. That's why he's not here right now."
Later, when someone proposed that the budget for the Department of Developmental Services's Division of Autism should provide services for all people who need them, this mother added, "I read all these people on the internet who are very happy to be who they are, who are proud of their differences and quirkiness, and who are very deeply offended at the idea that they might need services or be cured. We need to make sure the squeakiest wheel doesn't get the most attention. The people who speak the most shouldn't get the most services."
Choosing not to mention the fact that highly verbal Autistic people tend to overlooked in vast numbers in terms of receiving any services in favor of non-speaking Autistic people with few adaptive functioning skills (in direct contradiction to the mother's statement) I responded, "We should amend that language to say anyone who either needs or wants services; that way, those whose families advocate for them can receive services as well as people who request them for themselves." When I said, "We need to ensure that anyone who needs services is able to receive them," the mother snapped, "We're stating the obvious."
Sadly, this kind of animosity and vitriol is all too common in the autism community. We're all familiar with it. But let me dispel a few misconceptions that this mother demonstrated:
Firstly, self-advocacy is not limited to highly verbal people with the Asperger's diagnosis or a self-diagnosis. There are many Autistic people involved with the self-advocacy movement who are nonspeaking, have little verbal abilities, have few adaptive functioning skills, and or may require intensive supported living services, as well as people with many verbal skills, moderate to high-level adaptive functioning skills, and who may require few if any supported living services. To claim that involving self-advocates will exclude nonspeaking Autistics or Autistics with few adaptive functioning skills is untrue.
Secondly, as alluded above, including highly verbal people with relatively high levels of adaptive functioning skills also does not exclude all other Autistic people from either eligibility or funding for services. What it does is expand the eligibility criteria so that all Autistic people, whether verbal or not, are able to successfully petition to receive appropriate and necessary services in their individual cases. This is actually broader and more inclusive than were self-advocates excluded from the process or its results.
Thirdly, "people on the internet" comprises a huge swath of people with varying opinions and beliefs. There are some true extremists out there who promote ideas like "autistic supremacy," akin to the idea of "white supremacy" in that, according to this ideology, Autistic people are inherently superior to non-Autistic people by evolutionary design and innate ability. But the vast majority of Autistic self-advocates do not espouse theories like autistic supremacy. We simply believe that autism is both a disability and a difference, and that the disability should be mitigated and accommodated wherever possible while encouraging and recognizing the validity and value of the difference. For some Autistic people, there is more disability, and for others, there is less disability, but in all cases there is positive difference that, in part, defines the Autistic person's identity, as opposed to being a negative and removable attribute.
Frankly, I'm not all that surprised that my brief comment of two words ("And self-advocacy") was met so quickly with such violent rebuttal. But my hope is that in coming months and years, people from across the autism community -- Autistic people, their parents and families, caregivers, professionals, and educators -- will come to accept that whether or not they might agree on issues like cures and neurodiversity, all of us have valuable and important voices that need to be heard and acknowledged in order for us to move forward.