Autism 101: Hating Your Autistic Child

My son, Nicholas Hemachandra, in 2017; he was 14 when this post was written.

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.

Nicholas and Ray Hemachandra at the top of Rainbow Falls (Photo by Heather Holt Hill)

Nicholas and me at the top of Rainbow Falls in Gorges State Park, North Carolina (photo by Heather Holt Hill)

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?”

“And Poppa loves me.”

Right. Just right.

Nicholas' smile sometimes still shows the effects of the Bell's Palsy. (I asked his permission before posting this photo, taken on Sunday.)

Nicholas’ smile sometimes still shows the effects of a stroke. (I asked his permission before posting this photo, taken on Sunday in Holmes State Forest.)

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:

91 thoughts on “Autism 101: Hating Your Autistic Child

  1. Hi Ray. Just loved this piece! I work with Action For Autism, New Delhi (autism-india.org). Seeing that you welcome people sharing your articles on the social media, I am writing to request if we could please publish this particular article in our forthcoming issue of the Autism Network, an Autism Journal published by Action For Autism’s three times a year. The print versions come out in April, August and December and the journal is also available on our website. We would of course carry any acknowledgements in addition to details of where the article was first published, that you think fit. I’ve already sent a more detailed request, around a week back, both through the ‘contact’ format given in this website, as well as in your facebook inbox. Keeping my fingers crossed for a positive response soon. Thanks. Indrani

    Liked by 1 person

  2. My goodness. Those comments were certainly eye-opening. But I appreciate the honesty and openness of everyone concerned, even though much of it was hard to read. I think it has given me some insights I didn’t have before about my own family. It took me a long time to like who I am – sensory and empathic irregularities and all – but I never really understood that the pain these parents are expressing is their own. Growing up, I felt terrible that I could not be the way my family wanted me to be…but reading those comments as an adult gives me a better understanding of what they were going through.

    I love your article – it is empowering and wonderful to read from my perspective – but it is also important for me to see the expressions of pain that this perspective causes parents like mine. I’m sorry they found it so painful, but I think it hurt them more than it hurt me.

    My sensory issues with sound can be annoying sometimes, but the flip side is wonderful. I hear things other people never hear – I would never want to give that up, even on the days when speaker distortion sends me sobbing, running blindly away with my hands over my ears. It’s worth it.

    Same with my empathic tendencies. Yup, people can wear me out, and make me (quite literally) hide under the bed, but it’s also kind of cool to experience other peoples’ feelings on a very deep level. I wouldn’t trade that away, either.

    Liked by 1 person

  3. Sure you can hate autism and love your child…or you can wear “autism” like a badge. I have never once in my life said I hated my child’s autism but I also have never judged anyone for saying that. I don’t care for it, it’s not conducive to constructive resolve with one’s frustration but aye, we are all wired uniquely.

    Autism, or the term, is a social construct. It is a label that helps those involved with it (and others) differentiate. The philosophy of words comes into play…the philosophy of labels. Man do I hate philosophy but constructed words and labels are useful. In the case of someone receiving the diagnosis, at that very moment (depending on the state/country/etc) it means “help”.

    To your point, which I understand at it’s core, saying “hate autism” is saying “I hate the behaviors that don’t fall in line with the rest of society”. I think it’s juvenile to think that way and let me explain why. A child with autism wants to take a spoon from a restaurant because they get some sort of sensory relief from holding a spoon (this is the case with my child actually but the example I’m using has yet to happen). The parent tells the child “we have to put back…give me the spoon.” The child winces in anguish and screams, then proclaims “I HATE YOU! I HATE YOU!” (assuming they were verbal, mine not having this vocabulary). This surely doesn’t mean the child hates their parent. At that moment the child hates neurotypical behaviors, constructs, sets, standards, guidelines, rules…whatever you would call them. The child hates the fact that they cannot hold this spoon while walking out of the restaurant…not thinking that they’d have to essentially steal it which is illegal. That doesn’t mean the child loves theft. The child hates the situation. It’s a frustrating roadblock to them.

    Now, I would suggest we are not much different as neurotypicals. The question becomes that of the autism label…does it define the person with autism…or autistic person. Some people with ASD hate it as an adjective. They say “it does not define me, who I am.” You are (seemingly) a NT parent saying it does. Some autistic children prefer it as an adjective, descriptor…wear it like a badge. I’d guess most wear it as a badge…as part of their identity.

    I personally would never say I hate autism, it’s not in me. I’d be more inclined to say I hate the fact that there’s so many Neurotypicals who don’t accept or aren’t aware enough. I prefer the company of my daughter. I think many autistic people are more sincere, honest, real…they have trouble navigating the B.S. constructs we’ve put into place. Imagine a group of autistic kids bullying an NT? Whatever, I digress. My point is, an NT saying I hate autism…out of frustration isn’t “an abusive parent”. I would say it was abuse if they kept saying that in front of their child sure. It would be more apropos to say “I’m so frustrated and I hate not understanding” but I surely won’t judge someone as abusive parent if they proclaimed this. I’ve seen it a lot.

    I’d be willing to bet many autistic people have felt extreme disdain having to integrate in our NT lifestyle. I would not consider them abusive for it…just as I would not consider an NT, frustrated when trying to shepherd, abusive.

    ASD stands for Autism Spectrum Disorder and there are many other disorders of which those who deal with them (1st hand or 2nd hand) say “I hate sensory processing disorder”, “I hate eating disorder”, “I hate schizophrenia disorder” “I hate my CP” “I hate Rett Syndrome.” Most of the time these are extreme frustrations in which the person isn’t able to figure out how to deal with the situation at hand and copes with it by proclaiming something; insert profanity here (that doesn’t mean it really is bullpoop by the way).

    Insert foot in mouth, it’s insensitive. I don’t like it but if I heard someone else say it I’d be more inclined to say “Awe, don’t say that. I understand your frustration but you’ll get through this, try not to think that way.” That’s positive support. Most people would respond “yeah, I know, I dont hate autism this is just hard!” At least I’d hope. I wouldn’t go as far as to call that person abusive. That’s really kind of judgmental and furthering negativity.

    I get how you feel though. I see it on FB often, I don’t like it. It’s hard for me as a stranger to say something supportive as a retort but just as we aim to be positive when disciplining our children with ASD, it’s equally as important to show how it could hurt someone else if they heard that and encourage them not to…instead of saying “you’re wrong and abusive.”

    Liked by 1 person

  4. Reblogged this on Neurodiversity and Me and commented:

    I love this section. It’s important that people realise the importance of identity.

    “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.”

    Thank you

    Liked by 3 people

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