Full title and full disclosure: Autism 101: hating your autistic child … and teaching her or him self-loathing.
Twice in the past week I’ve seen “I love my child, but I hate autism” posts by parents of autistics. One was written by a real-life friend I respect greatly, and one was by a Facebook friend I’ve never met.
It’s not that this language is rare. Somewhat shockingly to me, despite much good work by many autistic adults and autism professionals, it is a language still common to many of the largest autism organizations and associations. It is a language still common to many autism parents. It is a language still common to media and general society.
It is, indeed, a language and idea most common and base.
Most times I wince, shudder, and keep moving, because it happens so often and it is so heartbreaking and we can only afford so many broken hearts before we, too, shatter. Or maybe I’m just too cowardly or tired on any given day.
But occasionally I’m triggered, and I say or write something. I have to. Well, I choose to. So here we are.
Let me put it plainly and directly: If you are a parent of an autistic child, you cannot hate autism and love your child.
If you hate autism, you hate your child.
Also, you are teaching your child to hate herself or himself.
Autism is essential to your child’s identity. If you took away her or his autism — which isn’t possible — your child would be a different person.
If you want a different person for a child, you don’t love your child.
So, you aren’t hating autism. Autism isn’t a thing that exists to hate. It does not exist outside of its expression in actual human beings. We’ve just created an idea and given it a name and clustered definition, representing a shared way of being for some people. The only place autism exists is in people — it exists as real people. Instead, you are hating your child, despite your words and beliefs to the contrary. And you are teaching your child self-rejection and self-hatred.
Autism is no different than race or sexual orientation or humanity itself. It is simply part and parcel of a person’s being.
I love my black child, but I hate blackness. I love my gay child, but I hate homosexuality. I love my son, but I hate men.
I love my autistic child, but I hate autism.
Like the others, that is a failed formulation, incoherent thought and emotion and obviously harmful.
It is not love.
It is abusive parenting.
Autism is integral to every part of your child’s personhood. It informs the way he or she thinks, feels, acts, and engages —receives and expresses — with the world, including interacting with people, most certainly including you.
If you want to take away your child’s autism, you will fail. And you will also fail as a parent in every important way.
If you hate autism, you not only hate your child: you hate every single autistic child, every single autistic person.
You are prejudiced, and when you say that you hate autism, you are engaged in hate speech.
Haters gonna hate, the saying goes. But there’s hope. The hope resides in you.
It’s like when someone who is anti-gay is told that she or he has a gay child. A lot of disowning used to happen after that. It was terrible. It caused unimaginable harm. People tried to be who they weren’t. People were rejected. Lives and families were injured.
But the world has changed and people have changed. There’s more acceptance now, more embracing even: embracing that child or adult as every bit as beautiful as anyone else, embracing her or his orientation as an essential expression of who they are, and loving who they are.
Society is a little bit further back on the curve for the autistic population. We’re still trying to cure. We’re still trying to eradicate.
But, setting aside language about there being nothing to cure, there simply is no cure — even if children’s or adults’ expressions of autism are overridden, that’s still who they are inside and how they process and engage the world and exist in the most essential way. It’s like someone gay pretending to be straight or a lighter-skinned black person pretending not to be black. There have been times and places, and there still are places in this time, where that might lead to greater societal acceptance. But no empathetic person thinks such artifice could possibly fulfill a person’s best life — a life that is truthful and joyful and real. I ask you to strive to support your real child in having her or his best authentic life.
It does get complicated, including for me. My son, Nicholas, is 14. He has been described by professionals as having classic Kanner-type autism, at a time when the definition of autism is undergoing undulating expansion.
There is a difference between supporting a child — or any person — and trying to change them into someone else. The difference is in some ways obvious but in some ways fairly sophisticated: we can fool ourselves into thinking we’re doing the former when we’re really doing the latter.
My child is the heart of the world. And I remember quite well the years of tantrums and self-injury, kicking and flailing, no talking, triggers of all sorts in every aspect of his life. He wore a helmet for years to avoid fracturing his skull.
I tried to help him, not change him. That desire drew us to North Carolina and the TEACCH supportive model of structured teaching (and living), rather than “curing.” The strategies we employed helped him feel more a part of the world. They supported him and alleviated some of his stress. The world became more sensible to him. He became happier.
Still, there’s always a balance to be found around “helping” — around parenting and therapy and teaching models. When does supporting someone in their happiness and well-being cross into sending a message of trying to transform their autism — assigning characteristics to autism and labeling them as bad and needing to change — and thereby of rejecting the autistic as an autistic? When do we shift from good intentions, even good intentions with substance and not just parental self-interest, into abuse?
What does the child feel and hear and know?
The answer isn’t easy. It can’t just be about intentions. It’s also about what’s received in words, feelings, actions, perceptions, and emotions. Over the years Nicholas has done an awful lot of occupational therapy, speech therapy, TEACCH sessions, social skills sessions, and more. The thought gave me pause last night. So, as I tucked Nicholas into bed, I asked him — utterly out of the blue for him, but he didn’t hesitate in his replies:
“Nicholas, do you think I hate autism, like autism, or love autism?”
“Poppa loves autism.”
“Why do you think that?”
“Because I am Poppa’s guy.”
“And Poppa loves me.”
Right. Just right.
Still, acceptance and embracing aren’t always easy. While I’ve never wished Nicholas didn’t have autism — I’ve never hated autism, much less said so — Nicholas had a stroke a few weeks ago, causing significant facial asymmetry, among other effects such as cognitive regression and a diminishment of fine-motor skills and clarity of speech.
His smile, especially, made his face seem contorted. When he would try to smile, his mouth would torque downward and to the left. It looked painful, even though it probably wasn’t. Nicholas was confused and upset both by his appearance and by his inability to control his own facial muscles. He became very anxious, and his tics and stereotypic movements increased significantly over the next few days.
I felt some anguish: this kid sometimes has had a rough time of it. I hoped that the effects of the stroke would just go away, even as I knew that if they didn’t, we would need to accept and embrace them.
Certain effects from a stroke can correct quickly, a good while later, or never. The facial asymmetry improved a lot for Nicholas, relatively quickly, although it still is present and worsens sometimes, at unexpected moments and especially on long days. Also, strokes predict future strokes.
I know I need to help my son find a language and attitude of accepting and embracing should the facial asymmetry increase again or should another major episode occur down the road.
And the only way it will work, the only way it will be authentic and meaningful for him, is if I really mean it.
Thank you for engaging with this article. If you’d be so kind as to share it on social media channels using the buttons below the post, I’d appreciate it. I also invite you to explore some of my other articles about autism on this blog, among them:
- Top 10 List: Things to Remember When Working with Autistic Children
- Accept or Reject: Part 1 of a six-part series on autism value contrasts (with links to the other five pieces)
- On Blackness and Autism, Identity and Essence
- Nicholas Thurman Jackson Hemachandra: the puzzle known as Superman
- Anti-Autism Prejudice
- Autism and Grief
- Roads Not Taken: Lessons in Autism, Inclusion, and Life
- The Autistic Spectacle
- Autism and the Human Condition: Ourselves and the Other, Ourselves as the Other, Ourselves and No Other