It was rather unexpected.
There we were, at what was only our third or fourth meeting in 2019. As mentioned in an earlier post, this rag-tag bunch of fathers who have special needs children, were still getting to know each other. Gathering to bond over shared parenting experiences and unique challenges; to brainstorm ways to reach other caregivers like us who needed support.
Then it happened.
After one of the new members introduced himself and spoke briefly about his “autistic child”, and some of the challenges he faced raising the boy, the speaking turn went to this next fella. Let’s call him A.
That’s when ‘the bomb’ fell as A uttered what for me was the statement of the night:
“I think we must change our language. Instead of saying our child IS autistic, we should say our child HAS autism.”
“My child HAS autism” (Person-First Language)
To some this might just be a case of playing with semantics. But I can assure you there are those like A who are all about this notion of person-first language, which contends that we should always put the ‘person’ before the ‘condition’.
There’s certainly merit to this point of view. When hosting a gathering, you wouldn’t say: “Hank, I’ll like you to meet my diabetic brother Scott.” Or “Tony, this is my leukaemia dad Howard.” It’s safe to say anyone within earshot would cringe at such introductions! And just think how Scott and Howard would feel?
So the argument could be made for autism to be part of this same category.
Living in a society that still has room to grow in its journey to be more inclusive, the last thing I would want is for others to continue disparaging my son and treat him like a pariah to be shunned and avoided. Just because he has a ‘condition’.
And being a language and communications educator for nearly two decades now, no one needs to tell me twice that our choice of words matter.
But precisely because it matters, I have grave misgivings about this approach. For by saying “my son has autism”, am I saying autism’s a disease that must be defeated? That no expenses should be spared until a permanent cure is found?
Nearly a year ago I wrote about this, and how the continued insistence of a small but vocal minority touting what amounts to “snake-oil” treatments, is just hurting the rest of us. The rest of us who are trying to help our charges live meaningful lives, regardless of their special needs.
Of course I understand why there are still parents out there who, say, believe in the use of bleach to effect a cure! Which of us in the initial year of our child’s diagnosis didn’t wish with every fibre of our being that our child could someday be ‘normal’?
I’m sure it’s what fuelled A that evening to launch into his tirade about us needing to change our lingo.
But expending needless efforts and resources to secure a cure? Instead of empowering our kids to live well, while simultaneously advocating for greater societal acceptance and inclusion?
That’s just a trip down bottomless rabbit holes! It leads to extreme stress, and an outcome-only pursuit that loses the person and the process along the way.
Because you’re so busy denying (the condition) and demanding (a permanent cure), you’re ignoring your child’s day-to-day need for love and acceptance for who he “is”, so focused are you with what he “has’ and who you want him to be.
Not to mention the growing resentment for the poor kid, as he’s made to hop from one treatment clinic or session to another, time and time again!
“My child IS autistic” (Identity-First Language)
Which brings me to the other side of this argument which advocates for an identity-first rather than person-first language (incidentally, this is the stance of many on the autism spectrum).
To identify my son as autistic is to make clear this is a ‘condition’ that’s not only life-long, but defines him to quite an extent.
Some might even consider this a far higher, enlightened way of thinking about this issue.
You see, the earlier argument (“my child has autism”) wants you and I to recognise that people like my son are first and foremost people; their worth, value and identity reside within that definition. That the condition that had befallen him was something ‘outside’ of him; not part of who he is.
While that approach may affirm his personhood, it is predicated on an artificial set of terms. A set of terms dictated by society as to what ‘personhood’ should be. And it is arguing that this ‘externality’ that is autism is both unwelcome and unwanted.
In my opinion, the other argument (“my son is autistic”) however, moves the discussion up a notch. It reminds us that persons aren’t all “built the same” and we should recognise every part of that person as core to who they are.
So autism is just one of many jigsaw puzzles in the box set.
Ignore or lose this piece, and the picture will never be complete. Conversely, lose all the other pieces and that autism piece will lose its reason for existence!
He’s my sadness, my hope, my love
It was rather unexpected (again).
Or maybe it was divine timeliness.
There’s a scene in this week’s final episode of Disney+ series WandaVision Season 1, which offered words to my tussle with this autism debate.
In it, Scarlet Witch Wanda’s chaos magic spell, that trapped an entire town into a kind of holographic world, was finally going to be undone. The town would finally be restored and the town folks’ lives returned to normal.
But that also meant that Wanda had to let go of the three loves of her life who were part of that make-believe world: Vision and their two sons. (I have two as well! Is Marvel getting intel on me from Pixar?!)
In the scene just before Vision, the boys and her holographic world disappeared, the Vision Wanda created asked her who he really was. Was he a figment of her imagination or a resurrected cadaver she breathed life back into?
Her response was telling:
“You, Vision, are the piece of Mind Stone that lives in me. You are a body of wires and blood and bones that I created. You are my sadness and my hope. But mostly, you’re my love.”
I nearly choked!
The truth is this: if I accept the science that autism is the result of a unique neurological wiring of the brain that my son was born with, then his ‘condition’ is an inherent part of who he is; a part of his innate identity.
Do I then insist this innate part of him needs ‘fixing’? Do I reject that which is a part of who my son is, just because it makes him feel/see/talk/think/do things differently from the rest of us? The “us” who are labelled “neuro-typical” (a term that’s itself incredibly divisive)?
Who’s to say we aren’t ourselves autistic while my son and his peers neuro-typical?! It’s all a question of perspective no?
So I’ve decided to take the cue from Wanda and follow the path of love.
When the time comes, I’m gonna ask C how he would like me to introduce him to others.
And maybe, his reply would simply be:
“Dad, just tell people my name and that I’m your son. That will do.”
PS Coincidentally, the Autism Society of America started urging all media outlets yesterday to consider calling next month the “Autism Acceptance Month”, rather than the “Autism Awareness Month”, as April’s typically designated as. Words matter!