Sometimes people aren’t satisfied with the truth, because the truth doesn’t suit their agenda.
I’ve written that autism can be both a gift and a curse, and that it can be both within the same person. I stand by that statement.
Some parents of severely disabled autistic children don’t think I weigh in strongly enough on their behalf. They see nothing positive in their child’s condition, and want autism characterized as a devastating disability with absolutely no redeeming qualities. Certain neurodiversity advocates attack me for even using the term severely autistic, arguing that autism can’t be measured in terms of severity.
Listen folks. Autism isn’t black and white. Right now, autism is a psychiatric diagnosis that’s used to describe clusters of behaviors that seem to have multiple underlying causes.
Some autistic people are absolutely brilliant. Among autistics we find artists, scientists, designers, performers, and engineers. We’re responsible for innovative solutions to complex problems. We offer the world new perspectives when the old ones have proven to no longer benefit our institutions, workplaces, and societies. The skillsets we offer are as diverse as the skillsets you find among neurotypical people.
Many autistics are just trying to plug along at ordinary, unremarkable jobs in offices, food service, or the like. They’re just trying to eke out a living while staying safe from cruelty, judgment, and debasement. They don’t want the burden of being involved in complex conversations about a neurological condition they didn’t choose. They just want to get through the damned day without being made to feel they owe anyone an explanation for their differences.
Still other autistic people are so thoroughly disabled they can’t perform the most basic functions of daily living on their own. They may engage in violence that threatens the safety of themselves and those around them. Some autistics require round the clock care, and seem to be almost completely disengaged from the world around them.
All of these experiences matter, and all of them merit being included in conversations about this diagnosis.
I’m not going to engage in self-loathing over my diagnosis and its manifestations just to please parents who are struggling with the challenges of raising a severely autistic child. I’ll be your ally. I’ll support your efforts to heal your child as long as the healing doesn’t hurt them. I’ll offer my compassion and any insights I might have into the reasons for their behaviors. But I won’t degrade myself or deny the complexity of my human experience to suit your emotional needs.
I’m also not going to pretend that all the various states we’re calling autism amount to a tragedy. I’m not going to pretend that autism is the worst thing that has ever happened to me. The worst thing that ever happened to me is decades of abuse, bullying, and sexual assault that were perpetrated against me by neurotypicals who despised my differences for reasons I still don’t understand, and took advantage of my inability to advocate for myself. I don’t have Stockholm syndrome. I’m not begging to join your ranks.
I credit my autism with allowing me to escape from situations that destroyed many of my age group peers. I’ve always been obsessed with knowledge. As a teen, I was fixated on acquiring information while the neurotypical kids around me were fixated on fitting in. That may sound like a benign difference, but I’m from an area saturated with drug and gang related violence. Holing up with books rather than being social with my peers was a real asset. Autism propelled me to higher education. Many of my neurotypical peers went to prison.
I’m also not going to plunge headfirst into a neurodiversity is nothing but quirkiness and charm narrative. I’ve read more times than I can count that the problem isn’t autism, that the problem is the comorbidities of autism. This perspective demonstrates a deep and fundamental ignorance of the interconnected workings of the human body. You can’t have a little golden autism pod in your brain that’s completely distinct from the debilitating depression pod. You can’t have fibromyalgia or multiple chemical sensitivity that’s absolutely compartmentalized from the workings of your central nervous system.
Nothing would be more fantastic than to heal a hypothetical autistic’s gastrointestinal distress, insomnia, seizures, and intracranial hypertension—all while retaining the synesthesia, eidetic memory, and superior computational skills. But given the interconnectedness and sophistication of the body and brain I don’t think this is possible.
We’re seeing a variety of distinct or overlapping mechanisms that are all getting clustered under the umbrella of one increasing inadequate diagnosis. The autism I see among people in their forties often looks quite a bit different from the autism of people in their twenties. By that I mean that when those of us in our forties were in our twenties, we shared only a handful of core characteristics with the young folks we’re seeing now.
Children with vaccine induced injuries are being diagnosed as autistic. I think vaccine injury a distinct condition, but the fact is, autism is the diagnosis most vaccine injured children are given. And those children, who usually have incredible needs for support, are lumped under the same umbrella as those of us who were born this way and are usually far less disabled. Behaviorally disabled kids with PANS and PANDAS are also being diagnosed as autistic.
Do you see the problem with where we’re at in this point in history? Researchers are scrambling to uncover all of the various genetic, microbial, infectious, and injurious causes for a huge array of neurological differences—all while lumping them under the same diagnosis. This dynamic is causing hurt and division that does nothing but chip away at the unity we could leverage to elevate this conversation.
We need to come together instead of pushing one another apart. I support unity. I support truth. I support love.