This post originally appeared on Love & Autism. You can read it here.
I'm tired. I'm tired of the fight.
Fighting takes something out of you and in our autism community it feels like there is a lot of fighting. Fighting for an initial diagnosis, fighting to keep the diagnosis, fighting to get services, fighting to find services that actually work, fighting for humanistic interventions, fighting the judgment of others.
I’m tired of the hate.
Tired of the demeaning of children in the name of science. I'm tired of the endless counting and counting of negative behaviors. I'm tired of the simplistic notion that any person can be objective towards another human being. I'm tired of autistic children needing to prove to educators that they are worthy of a curriculum. Autistic children are being objectified, reduced to percentile points gleaned from standardized assessments. Autistic people are discriminated against in their educational setting, in employment, in the world. I’m tired of watching this happen to our fellow human beings.
Fighting takes something out of you and in our autism community it feels like there is a lot of fighting.
I'm exhausted by the endless waiting...
and waiting and waiting for anything to get done. We wait for insurance to approve services, wait for the IEP team to offer an assessment, wait for an IEP team to fail so that we can do what is right and good. We’ve spent years waiting for treatments to change, to become more humanist and respectful. I’m so over waiting.
I sickened by the othering, by the discrimination.
I’m sick to my stomach when a parent tells me a story where their child has been forced to comply to earn the very basics of human decency; the attention of an adult. I’m sick when I hear again that a child was restrained, treated as a criminal when we have so many other ways to help children calm. I'm sick when I enter a kinder class and the inclusion kids are lumped together in the back. I’m sick again when all kids are grouped with peers, but the autistic kid is paired with his aide. So very sickened by how autistic children are treated by the very people that are supposed to help them. When I read about an autistic person completing suicide or being harmed by a trusted person; I’m more than sick.
I’m over it.
I’m over the rewards and praise as a lifestyle choice. It doesn’t feel like a way to live to me when everything is made contingent on our previous actions. I'm over the phrase "naturalistic opportunities." When did an autistic kid playing at the park or his own living room has to become a naturalistic opportunity rather than just where she chooses to play. I’m over watching therapy that looks more like dog training then growing the heart and soul of another little being. I’m over professionals using scientific journals than common sense humanity.
But, I am also hopeful.
I'm hopeful that these young people who have to spend their formidable years being doubted and demeaned will collectively and individually create sweeping changes.
I’m hopeful that clinicians will join me in shifting the status quo and demand humanistic practices.
I’m hopeful parents will discover their child’s autistic neurology and know that it’s not a death sentence.
I’m hopeful that scientists will do research that matters to the many that are living and loving on the autism spectrum.
I’m hopeful that our children will grow up in classrooms where neurological differences are understood and appreciated.
I’m hopeful that the neuro-majority beings to understand the power and privilege of walking in a world that is made for us and considers how to create safe space for those in the neuro-minority.
I’m hopeful that the pathology paradigm will retire and give way to neurodiversity. I’m hopeful that change will come soon.
Thanks Jenny. This is so heartfelt amd inspiring.