Many people with autism are also diagnosed with Sensory Process Disorder (SPD). Much like autism itself, diagnosis is not always clear-cut. We all, to some degree, have some sensory sensitivities or proclivities. But true SPD is more than that. We know from people who are capable of describing such things, that some people do process sensory “input,” like lights, sounds, and touch, as well as movement and awareness of body in space, differently than people without SPD.
I don’t know if Moe has SPD. I’m sure if you asked our Occupational Therapist, she would say unequivocally yes. If you ask our ABA Director, he might deny such a thing exists. And herein lies the challenge.
Moe is a sensory seeker. He loves to play with water and have his back rubbed and feet squeezed. He is calmed by swinging and gets riled up by spinning. He will occasionally do things like pull the grass and watch it fall very closely to his eyes. Everything goes in his mouth. He likes stronger flavors than most kids his age (spicy or sour) and seems to have a fairly high pain tolerance. As I write this, he is screaming, not out of any or frustration, but because it is a new “stim,” or so it seems from the outside.
But how do we know he has a processing disorder? We do know he has severe language impairments. Without language to process the world, what is left but the senses? Moe can touch and taste and explore with his body. It is what he understands. He cannot connect to others with conversation, but when someone rubs his feet, that feels good and he likes to keep that going. That seems perfectly reasonable to me, not like a disorder at all, in fact.
Moe does have some sensory sensitivities, especially to the dog barking and to the sound of his little sister crying. His sensitivities are not extreme in that he can recover from them fairly quickly when the noise stops, but he is clearly bothered by those sounds quite a bit. I am too. Those two in particular make it very hard for me to concentrate. If the dog is barking, I find I absolutely cannot continue a conversation I’m having. I don’t go running from the room, but I am also older and able to regulate my reactions better. Now I don’t know if Moe and I fundamentally process sounds differently, but it is hard to diagnose a disorder based on hating two of the most annoying sounds known to man.
I mentioned the word “regulation.” This is something Moe has quite a bit of trouble with. He can get very excited very quickly, and sensory input is often helpful in calming him down. A lot of what we do in OT is related to these regulation and calming strategies. Moe can also be quite impulsive. But again, without language or the sense that there socially acceptable ways to behave and not behave, and no way to ask for things beyond the few gestures and sounds he has, the line between sensory processing and behavior becomes blurred.
And this brings me to something I’ve come to learn about Moe, and about why so many of the techniques we’ve tried in the past with him may not have been successful. It is very easy to attribute Moe’s behaviors, like grabbing, pulling, and biting, to “sensory needs.” In his classroom, they would give him things like weighted vests, fidget toys, and chewies when he was acting out, especially during activities like circle time. And sometimes those things helped and sometimes they didn’t. And when Moe used a “replacement behavior” like chewing on a pillow instead of a person, they claimed success and moved on. But they weren’t addressing the fundamental issue.
How do I know that? Because it didn’t stop the behaviors. In fact, it may have increased them. Imagine if you were trying to tell someone that you didn’t like circle time, or didn’t understand what was expected of you, and they stuck a heavy blanket on you. You might, for a moment, think, “this blanket is really comfortable.” But then you’d realize that you are still in circle time and you still don’t understand what you are supposed to be doing. And then you would be even more frustrated.
Sometimes, it seems Moe is unable to control his actions. He lashes out or spins wildly in his hammock swing or screeches, and I think he can’t help himself. But by working this summer with some talented behaviorists, I’ve learned that he can. For example, Moe will often get aggressive when getting ready for bed. I could believe that when he is over-tired, he cannot regulate his system, and the deep pressure input he gets when he grabs me is his way to try to calm down. Or I could believe that he doesn’t want to go to bed, and is acting out because that is his only way to communicate a pretty complex need. Or maybe the truth is somewhere in the middle. He’s overtired, feeling cranky, and is hitting because he wants me to know that he doesn’t like how he’s feeling.
What I do know is that with the right motivation, Moe is able to control his response. If, for example, I let him have his iPod while I’m changing his diaper, he is calm. It is not just that the iPod gives him a place to focus. He will be acting out, and I can say “do you want phone? Show me nice hands.” He will immediately calm. I can then say “please lay down.” He will lay down immediately. I hand him the phone and we get through the diaper change quickly and easily.
I am not denying that Moe has trouble regulating his emotional response. I don’t deny that he is a sensory seeker or that sometimes he gets so frustrated or overstimulated that a sensory approach is the right way to help him calm down. But we, as well as many who have worked with Moe in the past, have probably downplayed or misunderstood the behavioral component to his actions. We used what our ABA director called “explanatory fictions,” applying a sensory approach to a behavioral situation, and as Moe gets older and his needs are becoming more complex, as he is asked to do more and has more reason to try to get out of completing taks, we are figuring out better ways to both motivate appropriate behaviors and attempt to extinguish inappropriate (aggressive) ones.