It’s About Dopamine

Before I start serving up the main course for this week’s topic, I’d like to start with a deeply joyful appetizer. For those of you who are unfamiliar with some of the risks for individuals with Sotos Syndrome, approaching 40% of kiddos with this genetic disorder have congenital heart defects. Because he was not presenting with cardiac symptoms and would have needed sedation when he was younger, his genetics team agreed we could kick that testing can down the road until he was able to tolerate the test without anesthesia- with the understanding that if any symptoms should arise, waiting would no longer be an option. Using the momentum from previous medical desensitization programs, I worked on first EKG tolerance and then echo prep using therapy modules at home with gel and craft rollers. And this morning Tony was able to get that echocardiogram done without sedation. His Ultrasound tech told us he did extremely well…and I agree! This isn’t the quickest of ultrasounds, and he only needed two brief breaks. And I am ecstatic to report that we soon afterwards received the news we had long hoped for, that his heart is structurally normal.

And the larger duck squishy on his lap? That is a sweet story based in trying to teach him to do the right thing. We found it on one of the concrete walkways in his school a few days ago. He loved it, thought life had blessed him with a gift. He liked the texture. He liked the color. I told him it wasn’t ours, so we needed to turn it into lost and found. He was calmly OK with that, and I assured him (after taking a picture) I would Google Lens search for it on-line and buy him one. Only to have non duck-based egg on my face because it’s a discontinued JA-RU squishy that could not be found anywhere for sale. Now, I bought things that he approved of as possible replacements based on the pictures, but still he was disappointed. The very next day, while I was out of the classroom on my lunch break, the actual owner of said ducky (as luck would have it) walked into his classroom with it after retrieving it from the lost and found. Turns out he was a general education peer tutor. We’d not seen it with him before, so we didn’t know it was his. When Tony’s teacher told him what she knew about my quest to find a replacement duck and how much Tony had liked it, that young man gave the ducky to Tony. Super Cool!!!

Now, if you’re not Autistic, those stories probably left you with a very feel good hit of dopamine. And, depending on the Autistic, it still could have left you with something. But, I would like every one of you to read through the following:

For your neurotypical kiddo or individual, they are going to do something because the thought of making a loved one or authority figure happy is going to give them that motivating dose of dopamine. For an Autistic, the signaling may be weaker or not even really as present, and those things alone just won’t work in my opinion for a level 3 Autistic. Even for me as a kiddo, I was far more motivated by an external reward than verbal praise, and I am a level 1.

The “ony” in the above were written by Tony independently, with the first one happening two months ago. You can see the improvement in his final three letters, but writing is so difficult for him to try, he wouldn’t even attempt it without something he finds super motivating in return.

I have noticed there is a negative stigma that gets associated with the use of edible tangible reinforcement in particular. I have heard it likened to a bribe to do something undesired (and adult paychecks aren’t?). There are other negative stereotypes, and if you know anything about how I have managed our son’s therapy goals as one of his therapists and as his one-to-one aide in school, you will know that I personally have not based what I do on those perceptions, though I will try to share my perspective on it to anyone who is open to hearing it.

Current literature suggests that roughly 83% of individuals with Sotos have Autism. Like many level three Autistics, my son doesn’t do pretend play. So he’s really not motivated by toys. I wish he were, because it would be cheaper and have better optics for the neurotypical community, who doesn’t process the edible reinforcement scenario the same way an Autistic mind might. The closest I’ve been able to find are puzzle apps, but he’ll only work on typing chunks of sight words for those. Anything else he is still more motivated for those tasks by the edibles. And as much as Tony loves that squishy, he won’t do aversive tasks over and over again for it because he doesn’t find it “reinforcing” enough to encourage that or to put in so much effort for. And the truth is that for him, squish toys are a way for him to keep his hands occupied when he’s upset that don’t involve self-harming, so he needs to have access to them without the restrictions of waiting to do a task. Physical activity can’t be worked into his school day often enough to incentivize him to do task after task that he finds challenging.

Our son’s adaptive living skills test in the bottom 1%. So 99% of people in our country have an easier time learning and doing things, have more overall capabilities at the same age. We’re basically asking him to do stuff for at least 10 hours a day or more that are the equivalent of you being asked to do a subject you’re currently not capable of achieving more than a D or an F proficiency in at grade level compared to your same aged peers for the entire day. Wouldn’t you want to give up if that was you? I think that would feel really overwhelming as a reality. He definitely perspective takes enough to notice the capabilities of those around him in comparison to his own. Perhaps someone telling you personally “good job” would be enough to help you in those circumstances, but chances are even if you are neurotypical, without some extra reward being offered, you might find it psychologically defeating to repeatedly keep trying at something you were so far behind the curve on. Years of repetitious trying has brought him to his current capabilities. Not a matter of days, nor weeks, nor months. Years.

Even gross motor skills (which is his highest overall functioning skill domain) can be challenging for him due to the severity of his motor planning difficulties. We’ve been working on arm circles for years, just now approaching him being able to do it. These pictures are from me starting to teach him the farmer’s walk in PE, and he still needs correction for form and reminders not to stem with the weights for safety reasons. These instructions have to be bookended with reinforcement after successful completion to encourage him continuing to work on the skill in a positive manner.

And the fact that he has Oppositional Defiant Disorder (ODD)? If you look up pathological demand avoidance (which is mentioned in one of the earlier screenshots), you might discover that it sounds like the more benign cousin of ODD. Many kiddos with Sotos like my son also have ODD. Sometimes praising him can trigger the exact opposite of the desired behaviors, so it often has to be paired with an external reinforcer to begin to teach the desired response to compliments.

What you can’t see in the first picture, where he is sitting so delightfully safe, is that his harness system isn’t attached to the clips. He’s only in a seatbelt. Even for safety tasks we are working on, to avoid triggering his ODD and because for him it is often related to his severely delayed impulse control as well, which needs to be strengthened like a muscle, I will use frequent edible reinforcement in the beginning and then fade it out as quickly as I can.

For me as a mom, my main focus is the results. I think that all that is needed for the optics to change is perspective taking, where neurotypical members of our community are really educated on what this could feel like to lack the same dopamine system for an Autistic and to how trying to work through deficits this profound could look like to the Autistic mind. And so I thank you for your patience in my meandering main-course perspective based smorgasbord on the nature of dopamine and why edible reinforcement for level three Autistics needs to be reframed.

And, lest anyone gets too tempted to think this is just Google AI’s summative on who knows what quality of sources, I am going to leave you with this screenshot: