Truth and Compass: Universality and Difference Inside and Outside of Autism

Nicholas Hemachandra at the base of Rainbow Falls, South Carolina, yesterday.

My son, Nicholas Hemachandra, at Rainbow Falls, South Carolina, yesterday

There’s this meme among some autism and special-needs parents and groups, shared on social-media graphics and bumper stickers, in fundraising activities and chat sites, that we parents are, essentially, the most wonderful people in the world: self-sacrificing saints chosen by God to raise these children — that we, if not our children, are very special, indeed.

Autism parents are just like everybody else, though. There’s no reason to think we’re not a perfectly randomized selection and cross-section of parents generally and people generally.

Which isn’t to say we aren’t special and precious and divine. We are — just like everybody else.

We’re also flawed. We struggle sometimes. Some of us are kind, and some of us aren’t. Some of us are selfless, and some of us are self-absorbed. Some of us are good parents, while some of us are poor parents. Some of us are intelligent, some … less so.

Most of us are all of these things at one time or another. We’re brave and scared and wise and foolish. We try our best, and we screw up. We become overwhelmed. We crawl into the fetal position. We get up. We keep going.

Just like the parents of children without special needs. And, really, just like most every human being on the planet.

Sanctifying or saintifying the population of autism or special-needs parents doesn’t help anybody. If anything, it puts more on most parents than they can deliver. It helps make everyone less aware of the support many parents need.

No one gets a license to become a parent. And for a non-autistic, parenting an autistic child — a child in some essential ways different from ourselves — is like needing an advanced university degree at a time when we haven’t even entered nursery school yet.

Which is why we seize upon whatever we’re told as truth and compass.

Autistics, meanwhile, are subject to ridiculous personality generalizations, as well. In particular I’m thinking today about the idea that every “negative” character aspect manifests from their autism and thus is either excusable for the sake of neurodiversity or proof of autism’s destructiveness.

Such notions are utterly silly, as well as injurious to everyone involved. Just like everybody else, some autistics are kind and some aren’t. Some are selfless, some self-absorbed. Some are good people (and parents), some poor ones. Autistics can be brave, scared, wise, foolish, and all the rest.

The idea that any dislikable characteristic of an autistic is due to her or his autism, first of all, is one of those memes that makes autism evil and responsible for all the bad or uncomfortable things emanating from an autistic person. It also instructs autistic people, “This is what you’re like, you can’t help it, so you don’t have to try to develop your character like everyone else does.”

As parenting or societal approach, it handicaps autistic people unfairly: You’re this way because you’re autistic.

Nicholas Hemachandra

My son, Nicholas, near the base of Rainbow Falls, S.C.

No, you’re this way because you’re you. And sometimes you’re also this way because of the self-fulfilling expectations of those around you and, ultimately, of you yourself.

And now and always you get to make choices about who you are, whether you’re autistic or not, as we all do within our contexts: our neurology and circumstance and family and culture, our bodies and our brains, our souls, and our lives.

Similarly, I sometimes hear autistic people, adults and children, say that if they weren’t autistic they would be more social, less awkward, and have more friends. I’m this way because I’m autistic.

Well, maybe. But some non-autistic, or allistic, people don’t have any friends at all. Some non-autistic people can’t figure out how to get a date, either.

Some non-autistic people feel like they say the wrong thing all the time. They can be completely socially inept. Some can’t read other people. They can be misinterpreted, too. They get stuck on things. They make mistakes that are consequential or do not really make mistakes but nonetheless find they are unable to express and explain what they really meant, get clear, and fix things.

I took a lot of heat for my last post, Autism 101: Hating Your Autistic Child. I stand by it. I received a lot of moving, heartfelt appreciation from autistic adults, some from autism parents, and then immense and varied condemnation (entirely from autism parents of young children, with none from autistic adults). For all the personal vitriol expressed toward me — including some remarkable assertions (among them that I’m lucky to be a single dad; that because I’m so selfless I lack compassion for the selfish; that not thinking about autism as being like cancer is narrow-minded; and various assumptions about my autistic son, Nicholas, now and earlier in his life that are utterly untrue … because how else could I possibly think this way) — what I actually regret is omitting a fundamental truth: this is what many parents have been taught.

My son at the Caesars Head Bald Rock, S.C., overlook yesterday afternoon.

Nicholas at the Bald Rock, S.C., overlook

(There’s a language I embraced a couple of years ago in a particular situation, an understanding and lesson learned from Byron Katie about defense being the first act of war, about listening and finding what’s really true and still letting people have what is true for them. But for me that doesn’t extend out to accepting when abusive beliefs become abusive actions toward children or a vulnerable community.)

Anyway: Parents get the diagnosis for their kids, they’re unfamiliar with autism, and they’re immersed in a medical and political model that autism is bad, autism is wrong, they have to save their child, and they have to fight autism. Welcome to the war to rescue their and our children.

It’s hard — or, certainly, rare — to see through and transcend a cultural immersion in wartime propaganda and the language and thought forms it engenders.

And, having then raised a child in a way that embraces those values and so rejects autism, it’s very hard to say you were wrong — and you were parenting wrongly — and correct course.

Think of any abusive and evil society, cult, or family. Breaking those bonds, breaking out of the mindset, is extraordinarily difficult. But, of course, they need to be broken and broken out of for these children and people not to be abused.

I was invited to give a talk to a psychology class about autism and adolescence at the University of North Carolina–Asheville last week, and while mentioning last week’s still-new blog post and the fervent and immediate autism-parent reaction, I stumbled upon a language I later realized was borrowed from Marianne Williamson in one of my interviews with her about something entirely different (well, maybe not entirely different: Marianne was talking about militarization and nuclear war):

So what if they’re right?

So what if autism isn’t really, as I believe, a form of neurodiversity, an aspect of identity akin to sexual identity or race, but it really is like cancer?

So what? Their children are still autistic, and they’re still going to grow up to be autistic. Let’s say, with all the aggressive interventions and ABA data-taking and war-hate language about autism, that 1 percent of these kids will grow up to be adults who don’t demonstrate any characteristics of autism. Let’s even say 5 percent, which is absolutely ludicrous, of course, and we’ll ignore for this exercise what that might mean for these people’s inner lives and well-being.

Nicholas Hemachandra

My son, Nicholas Hemachandra

That means 95 percent of these autistic children will grow up to be autistic adults taught to hate who they are in a society that has been taught to hate what they represent.

Loving parents must be brave enough to make a different choice — to accept and embrace both reality and their actual children.

To go back to the start of this post, autism parents are no better and no worse in character than parents generally — and people generally. A basic and very strong psychological predisposition of people, certainly including me, is that we look for evidence that we’re right. We believe arguments and evidence that say we’re doing the right thing, and discount evidence and arguments that would mean we’re in error — all the more so if they would mean we’ve been harming our children. We double down.

But as parents and human beings, we, too, ask for grace, and we seek it, so we can become better parents and better human beings and help create a kinder, more loving world.

 

Thank you for visiting my blog. I invite you to read other posts and, please, share what you find valuable using the social-media buttons found below each entry. Also, a list of some of my popular blog posts specifically about autism can be found here.

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7 thoughts on “Truth and Compass: Universality and Difference Inside and Outside of Autism

  1. Reblogged this on Sonnolenta… A Neurodivergent Journey and commented:
    This is a wonderful post. It speaks powerful words about the reality of our Autistic children. Autistic children grow up to become Autistic adults. Shouldn’t we be teaching them total self love, respect and honor of their neurodivergent selves? Yes, we should. This is the greatest blessing we can give them.

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  2. Wonderful post, and it warms my heart to see your hiking photos with your Son, but also because we live in upstate SC and have been to those places too! My Son is 12 and he loves our hiking trips so much.

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  3. Thank you for standing fast in your positive beliefs. They may not be natural to myself or to our society or culture. We tend to “wage war” on things. I believe challenging myself and others to try on this approach—- that who we are may not be a disease or a disorder, but just a part of ourselves, that we can see it for its strengths and weaknesses. I believe holding to this approach will bring us all more hope, acceptance and healing. Thank you for your writing, the way you accept and love your son.

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  4. Oh, reading this was, well,…an experience of me feeling so strongly and deeply…your writing always always inspires me. Touches me. Thank you. Yes.

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  5. It’s one of the roughest things to get across to defensive parents, is that I DON’T just think that they’re bad and abusive parents…that I KNOW they are truly trying to do their best for their kid…but that they are totally immersed in a culture which teaches them things about autism and about autistic people that have harmful effects on us, and tells them that those things are right.

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