Today, Ben gave me one of the greatest gifts I have ever received.
From the earliest days of autism, an alleged “hallmark” was the severely autistic person’s lack of emotions that we consider universal, and central to our very humanity. Thankfully, those days are long past, but for many, the impression or belief remains that autism means a constricted, reduced, or absent capacity for emotions.
In a way, it’s easy to understand. Even if a severely autistic person feels the same emotions all of us neurotypicals feel, it’s the expression of those emotions that’s the problem. Early researchers — Kanner, Bettelheim — misinterpreted lack of expression for lack of emotion. It is one of the nightmares of severe autism, a lifetime of feelings felt but unexpressed, leading many people to think you aren’t feeling those feelings.
We know Ben feels deeply, the evidence is there, but it is often more behavioral than verbal, and if you don’t know Ben, you will miss these clues.
And clues might be all we have. A phrase he repeats back to us is his way of agreeing or confirming that he wants something. “Are you hungry?” doesn’t bring a typical person’s “Yes” or “No.” (Actually, I don’t think he would ever say no to that question.) If he’s not interested in eating, he most likely won’t say anything, and if he is, he might repeat, “Are you hungry?” with the same phrasing and tone we’d used to ask him.
And though it can sometimes sound like echolalia, it’s not. (Echolalia is typically defined as “the meaningless repetition of words or phrases immediately after their occurrence.”) Ben doesn’t “do” echolalia. It might sometimes seem like he does, but his repeating of a phrase is purposeful and specific in what he is communicating. It’s not random, or accidental. If he disagrees or is opposed to something said to him, often he simply won’t repeat it.
Ben doesn’t tell us on his own if he’s happy, or sad, or mad, or scared. Sometimes we will ask, “Are you sad?” He might answer, “Sad,” or repeat, “Are you sad?” Or he might not, which may mean he is not sad, or he is sad but simply not answering. His facial expressions often are all we have to go by, or body language, or behavior, or verbal scripting. (Scripting is when he says phrases like, “She’s getting it,” or “It’s coming,” or “She’s making it,” when he’s in a McDonald’s drive-through line, as a way of dealing with the anxiety and impatience of waiting for his food.)
The rare times he lets us know something is up are shared in ways that are uniquely Ben, and they can be pretty cute. Karen was driving with him some time back, when Ben said to her, “Are you sticky?” For him to go to the effort to tell her, he must have been pretty sticky — and really wanted her to clean him off!
More abstract emotions, like love or affection, are never expressed directly. An occasional glance of eye contact when he’s smiling is huge. Between neurotypicals, it is a behavior that one barely notices.
When Ben does it, we notice. He is communicating his emotion directly. Nothing fills us with more joy, because that half-second of smiling eye contact is as close as he comes to expressing his feelings for us.
Until today.
Ben and I had just finished a drive through the wilds of Ohio. (His favorite activity, besides eating, is to “drive fast,” meaning highway drives, the longer the better, like today’s two 90-minute jaunts, divided by, yes, a sweet treat at the apartment.)
As I pulled into the driveway of his group home at visit’s end, I put the car in park, and said, “We’ll see you in two days!” As he opened the car door, I reached back and gave his leg a pat, and said:
“I love you buddy!”
It’s nothing unusual for me. He has never replied, and I don’t expect him to. He got out and closed the door.
As he walked past the open passenger-side window, Ben slowed almost to a stop, looked at me, and said:
“I love you buddy.”
As he walked on, he looked back at me, smiling.
I froze, and gasped. My jaw dropped.
I blurted, “I love you buddy!” again as he walked to his house and I sat in the car with chills running up my spine and tears coming to my eyes.
I was absolutely stunned. Ben was telling me he loves me, for the first time in our lives.
He will turn 28 this summer. It was worth the wait.
