Q: I am very interested in the importance of the autistic community and how speaking autistic people can better support and advocate for non-speaking autistics.
Niko: It seems like there are times when the disability community must come together to advocate on behalf of its broad array of members, and funding seems to be at the center of that Venn diagram. For example, I truly believe that if the IDEA [Individuals with Disabilities Education Act] were fully funded, many of the issues families face: not being included in general education, insufficient staff who are poorly trained and underpaid, going straight into special education in Kindergarten, not being offered enough instruction time, little involvement with typical peers, and expectations being set so low as to determine the student’s future when they are in middle school or even elementary school – would no longer be the norm, but rather, something we would learn about through documentaries and history classes, much like we can learn about Fairview Training Center or the 504 protests highlighted in the documentary Crip Camp.
Let’s move the focus for the moment to what I believe is the actual issue at hand, which is the lack of opportunity for the most marginalized among us to have our stories told. I do not mean by our parents or siblings – I am talking about us, the very people who live these lives under scrutiny of family members, school staff, and even strangers who are made uncomfortable by our presence. I have very few people in my immediate circle who are disabled, so I can’t comment on whether I feel a lack of support from autistics who are speaking, but I don’t feel like the issue is between non-speakers and speaking autistics. I’m much more skeptical of parents dominating their adult children’s stories. I think there needs to be a distinction made that it’s the stories of adults versus children I mean, as it’s a parent’s responsibility to make decisions in the best interests of their child regardless of whether or not they have a disability. There is actually an important thing I should make clear, and that is that parents should absolutely listen to, read, and engage with autistic adults and factor their experiences into any decisions they make for their autistic child. I mean, parents read books about every possible stage in a baby’s first year to better feel prepared for the unknown. It shouldn’t be a hard sell, then, to follow the advice of people who are living autistic lives and doing so unapologetically. After all, what every parent wants is for their child to grow up and be a happy person with strong, positive relationships and interests which fulfill them and maybe even provide them with an income. It may look different from what they had expected, but if they knew their child would be lovingly accepted into the autistic tribe, would that not bring them comfort? It seems like lots of parents want to center themselves in their child’s autistic experience well into adulthood. However, I can’t think of anywhere else outside the autism community that this happens. Parents, it’s time for you to listen to disabled voices: seek out adults who are as affected as your child, and learn from them. We are here, and we want to share our stories with you. Make us the center of that Venn diagram.