Definition as Destiny: Breaking Autistic Boundaries

Nicholas Hemachandra
Nicholas Hemachandra, 17 years old

We define autism, clinically and socially. It’s a construct, clustering people with certain human characteristics together. Here’s what autism is. You are autistic. This is what you are.

On the positive side, at least sometimes, this clustering fosters autistic identity and community. But too often it also separates autistics out from non-autistics and diminishes respect for the differences in aspects and being among autistic people.

Autistics are defined, corralled by expectations about who they are and who they can be — and, frequently, constrained in even their own understanding of who they can become.

They’re limited by what’s considered possible for them: by parents and family, teachers and therapists, social workers and potential employers, autistic organizations and society itself.

It starts in childhood upon diagnosis and continues in adolescence and adulthood, and it’s a whole lot for anyone to overcome. Doing so requires not just strength and bravery, but also revolutionary, evolutionary vision — and, ideally, loving supports, as we all need, autistic or not.

Even more than for the non-autistic population, which has its own normative prescriptions and proscriptions in this society, for autistics there is a pervasive pressure to conform — to both autistic norms and non-autistic norms, to meet goals of what is expected and in a fundamental way to relinquish individuality.

Surely, though, there’s as much diversity among autistics as among non-autistics. And surely, too, each individual’s possibility should be expansive and boundless, rather than restricted and narrowly defined by others.

In childhood, usually right after diagnosis, “best practices” and “evidence-based” teaching route parents toward specific pedagogic and therapeutic approaches. Often, we parents miss the pause — the pause necessary to account for individuality and to think deeply about the choices we are making for our child, respecting the diversity of the neurodiverse. There are different ways of learning, not just one right one. Different children and people best learn, develop, and grow in different models and settings, and that’s true for autistic children as well as non-autistic children.

Therapeutic goals assign outcomes (“should be’s”) almost always rooted in notions of typicality — or, if not fully so, then skewed by an assumption of limitations and oriented toward how autistic people can best fit in and adapt given those limitations. Too often, it’s all really about how autistics can best avoid making non-autistic people uncomfortable — ideally so most people don’t even have to take note of autistic existence at all.

We infantilize autistics of every age, as well. We injure their possibility of exploration because their language and being so often differ from our own that we can’t even recognize, much less honor, their path of development and map of dreams.

We fail to listen. We fail to learn how to listen. Someone communicates in a different way, and in our failures we deny their communications’ existence, substance, and value.

That is, we deny autistic children and adults their dignity.

Nicholas Hemachandra and Ray Hemachandra
Nicholas Hemachandra and Ray Hemachandra on Nicholas’ 17th birthday

What should we do instead?

The heart of our parental work should be to empower our children to author and claim their own identity and destiny.

The heart of our parental love should be to give them hope, choice, and support — to support them in their happiness, yes, and also to recognize that they are the ones who get to define what happiness is for them.

There’s a release of ownership here in empowering our children. We recognize and strive to empower them with agency and, if not independence, interdependence imbued with mutual respect.

My son, Nicholas, is autistic. He turned 17 last week.

Nicholas has a diagnosis of severe mixed expressive-receptive communication disorder, but he can verbalize his wants clearly when given an honest opportunity. He wants to have more friends. He wants people to like him and choose to spend time with him. He wants a girlfriend. He wants to drive a car. He wants to go to college.

I want Nicholas to be treated with respect and kindness. I want people to give him a chance and spend time with him, and when they do I know he will be loved and cherished as the magnificent gentle, sweet soul and man that he is. I want him to be happy, and I want him to be valued.

His wants and mine for him aren’t mutually exclusive. But his are more concrete and practical, mine mostly broader outcome-based for the quality of a life. And both our lists evolve and change with time.

Each day I try to pause — much like the pause I recommend to parents after a child receives an autism diagnosis. I consider if my parenting is representing the things my son wants or instead just what I want for him, and if I’m supporting him in his own striving for those things he wants, seeking opportunity for him and helping create a base from which he can aspire, achieve, and grow in ways I still can’t even guess or imagine.

I don’t always get it right. I try. Seventeen years in now, together, we’re both still trying.

And each day, every day, trying for my son is the greatest privilege, honor, and blessing of my life.

When the “Publish” button is hit on this post, that means my son Nicholas has read the piece and approved posting it. He always has to approve or not approve posts when I write about him, although I often forget to note it. Other popular articles about autism on this blog include:

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  1. Mornin Ray,

    My dear friend Mare Carmody forwarded this post to me this morning. I’m no longer on Facebook but am father to twin sons with Asperger’s Syndrome who are now 30 and still with me. They’ve been my full time job since 1996 when my now ex-wife’s career took off and I walked away from a tenured DOD Civilian position with the Navy. Long story short, I’ll be advocating for my guys until I’m gone. Their names are Kian and Niall and they both have IT Degrees and are very close to getting full time jobs with benefits at The University Of Virginia supporting scientists who are doing research on Diabetes. I would welcome communication with you to share my experiences in hopes some of them might aid you and Nicholas. In my 30 years with the twins I found that acceptance of who they are was always the beacon that led eventually to success in all of their endeavors.

    Thanks for writing this and sharing your truths with all of us.

    Hang in there and the absolute best to you and your son!

    Best always,

    Sid Hagan


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