Support or Save: Part 3 of a Talk on Autism


[I open this post, the third in a six-part blog series presenting a talk I gave at the Autism and the Pursuit of Happiness Conference earlier this year at the University of North Carolina, with a sensory break. I incorporated four videos into the original presentation, and hopefully I’ll be able to bring them all into these posts, as well: I’ve never successfully done this before tonight. One for one now with Wobble Baby from the Juneteenth celebration in Asheville in 2014. Nicholas is hula-hooping in the red shirt. The other three videos relate to the material presented; this one is just for joy.

I invite you to read the parts of the talk that preceded and followed this one. Links to the other posts are at the bottom of this one; the series starts with Part 1 here.

I originally wrote the material for verbal presentation rather than for someone reading it in print or online, so I’ve edited it lightly for content and context. I invite you also to take a look at a list of other popular posts about autism I have written here. Thank you very much for visiting my blog: I appreciate your support and your sharing material on social media (there are share buttons at the bottom of each post) you think might be valuable for people. ~ rah]  

The third value contrast I want to talk about is: SUPPORT OR SAVE. Save also means cure. Save also means control.

We are raising a child — as a parent, as a family, as a community, as a society. What are we working toward?

Generally, with this population, we are working toward neurotypicality. That is generally how we define best outcomes.

That is, mostly still we are working toward making these people exactly what they are not and we measure success by what degree they can become unlike themselves.

This is the save model: these autistic children need saving because they’re lost. It’s the cure model: let’s find a cure to this epidemic called autism that is stealing our children. It is the fix-it button, the magic pill — swimming with dolphins, laser therapy, chelation — and it is also boot camp and the drill sergeant:

The army will make a man out of you. ABA and other autism therapies will make you normal.

There is a harshness to that language I don’t entirely mean.

What we should be working toward is happiness, and sincere thanks to Sylvia van Meerten, Samantha Erway, and Empower Autism for making that the organizing principle of this conference. Many wonderful therapists and teachers, ABA and otherwise and including some of the best and most heart-centric people I have ever met, absolutely do make happiness the organizing principle of their work and frame support goals in ways that help parents make a transition in sensibility, too.

But many don’t. Most don’t.

What’s the difference? The actions taken might be — might be — exactly the same. But the language and the intent — the emotion and the very essence of the work and teaching being done, as well as the parenting being done, are emphatically different.

Nicholas Hemachandra, 14, earlier this year at the 8th grade end-of-middle-school dance.
Nicholas Hemachandra, age 14, at the year-end 8th grade middle-school dance.

The difference is wanting to cure your child’s autism versus wanting to support your autistic child. That difference is deep and profound.

Now one might say as a parent that this autistic child will be happier — will fit in better, function better, and have a better life — by maximizing her or his presentation of neurotypicality. We often do say that as parents.

This approach by itself, though, is akin to trying to make gay people present as straight. Which we as a society absolutely did for a very long time.

The truth, though, was and is that people can conform, be in a heterosexual marriage, present as straight, have kids … and still be gay.

And not be their fully realized selves living fully realized lives, and clearly not be living their authentic happiest lives.

We can take all the data we want, drill all the quirks and nonconformities out of an autistic child or adult, and that person will still be autistic.

Happiness requires respecting the individual. It requires someone respecting themselves. Does that mean we don’t do any therapies — ABA, TEACCH, speech, occupational, etc. — or parenting work to help someone diminish harmful or self-injurious behaviors? Or that we don’t develop positive supports to give these children every opportunity for well-being and happiness? Of course not.

But it means we treat them with respect and let them participate in the decision-making, even as children, to the best extent we can, so we are valuing what is important to them, not just what is important to us.

It means we respect the fact of their autism as an integral, essential aspect of who they are.

We attend to their communications of all kinds. We listen.

This is equally true even for nonverbal, high-support-needs children.

This is equally true even for very young children.

To make decisions for oneself is a fundamental human and civil right.* It is essential we consciously work to empower autistic children and of course autistic adults in every way possible, continually.

As parents, though, we certainly do make choices for our young children all the time, whether they are or aren’t autistic. That’s part of what parenting is.

But for nonautistic parents of autistic children, we are making decisions for people who are unlike ourselves in a very important way. Are we qualified to make decisions for them?

Are we competent to do so?

By some measures, anyway, the answer is obviously no. Our experience, our knowledge, our expectations and understandings are too unlike: our minds and neurologies work too differently. We receive and engage the world differently. We are making decisions based on what may be an almost flipped worldview.

So, to some extent, we don’t know what we’re talking about. Responsible, kind parenting asks more of us.

Fortunately — and far more so than even a decade ago and certainly than two decades or more ago — there is a tremendous educational resource available to us: the voices of autistic adults.

These voices are available to us in local communities at forums like this one and available to us at all times online through blogs and adult autistic community networks and social media. These are the most important sources of learning possible for parents of autistic people, for family members and community members, and for therapists and teachers.

What helps these autistic people? What hurts them? Which supports were actually supports when they were children, and which were torture devices? Did some approaches prove to be both? The “whys” we guess at about the way autistic people respond to the world — what are their “whys” to the extent they can be explained? What were they when they were children?

Each writer or speaker isn’t any other and isn’t our own child or friend or student or patient — each person is an individual, of course — but when you discover a consistency in messaging in some areas among autistics, you feel like you are discovering at least general truths for the population.

The shift in perception and in values as a parent can be profound.

I have had my own lessons along the way. Nicholas was a flapper. In elementary school, Nicholas desperately wanted friends and was extremely sensitive to teasing. Teasing was completely devastating and debilitating to him.

At some point in early to mid elementary school, I worked with Nicholas to reduce his hand flapping, which was yet another thing that differentiated him from other children and made him prone to teasing.

Two or three years ago, I noticed Nicholas flapping more again when he came back from one of his sleep-away camps. Other children’s behavior there seemed to give him permission. Recognizing that, and affected by something I had read online not directly related to flapping but of a similar kind — it was about grabbing, or chin grabbing and eye-gaze seizing — I shifted.

I told Nicholas he could flap all he wanted at home, and he could make a choice about it at school: flapping might feel good, or necessary, and it also might make him more likely to be teased. He was old enough to make a choice about it for himself. We revisited the conversation several times.

He did flap a little more at home, but at school it wasn’t much different.

Then Nicholas got an autism mentor. She flaps, and like with camp I’ve noticed that Nicholas’ flapping, as well as his general stereotypic movements, increase a lot during and after his interactions with her. Again, he seems to have permission to be himself then, and I am so glad for that.

That is increasingly the conversation with my son now: You are 14. Try to be self-aware. And you are the one who then gets to make choices.

*I’m fairly certain I picked up this exact language (“To make decisions for oneself is a fundamental human and civil right”) from a blogger or organization — it is too elegant and precise for my own typical turn of phrase — and I just don’t remember right now where I got it. If I find relevant notes from the time of my presentation, I will note it again here with an asterisk or by amending the text. I apologize for the omission. Omission being a gentle word to avoid the term plagiarism.

Here are links to all the articles in the series, and if you’re so kind as to share the posts on social media or to leave a comment on this page, I deeply appreciate it:
Part 1: Accept or Reject
Part 2: Grieve or Live
Part 3: Support or Save
Part 4: Acceptance or Self-Acceptance
Part 5: You As Autism or You as You
Part 6: Independence or Connection


I welcome your comments and engagement:

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s