Guest Author: Laurel Joss, M.A, ECED, RDI® Program Certified Consultant.     

I have been an RDI® Consultant for three years and an RDI® parent for seven. I started RDI® back when it was done in an empty room full of beanbag chairs. My son was four years old at the time. He’d been diagnosed with autism a year earlier, and like many mothers of newly-diagnosed children I spent a lot of time on the internet searching for help. Mainstream medicine offered little to children like my son, so I spent a lot of time on autism parent groups networking with other parents. I started hearing about a book called Solving the Relationship Puzzle, by Dr. Steven Gutstein.  

I ordered the book and was intrigued. Here was a program that offered more than “social skills”. This program could actually help my son to learn the “why bother” of social interactions, to help him to become intrinsically motivated to form strong relationships with his family and eventually with peers. I was excited when I heard that Dr. Gutstien was coming to my town for a two-day seminar and I registered. His presentation made sense to me and the video clips he played were nothing short of amazing.  If I hadn’t seen the “before” clips I never would have believed that some of these children were on the autism spectrum at all. I wanted that for my son.  

Luckily, there was a certified consultant in my area so I signed up for her waiting list and began reading more of Dr. Gustein’s books. At that time, there were no parent objectives. There was no online operating system. I cleared a space in my house and filled it with beanbag chairs. I started doing some of the activities in Dr. Gutstein’s book. Eventually our name came up, and we started to work with a consultant.  

The program has evolved over the years to its current form, which starts with parent training, then leads into specific child objectives. The early child objectives in Stage One guide parents through re-establishing a co-regulatory relationship with their child. Co-regulation is the dance of social interaction, in which your actions are influenced by, but not controlled by, your partner’s actions and vice-versa. When you are engaged in conversation, you are involved in a co-regulatory exchange. Once simple co-regulation is mastered, parents work on guiding their child in coordinating their actions together. Once this is mastered, you move on to Stage Two, where the foundations of collaboration start. 

My son had mastered Stage One, but some of the Stage Two objectives continued to elude us. In Stage Two, there are several objectives on nonverbal communication, specifically, parent and child learn to have simple, back and forth conversations using only facial expressions, gestures, or prosody. My son was able to do so with gestures, but facial expressions were always a challenge for him. It was frustrating to me that he was able to master objectives in higher stages, yet his difficulties with facial communication was always an obstacle. Finally, my consultant suggested that we have him checked for focal seizures.  

Focal seizures are abnormal electronic disturbances that remain in a limited area of the brain. They sometimes turn into general seizures, which affect the entire brain. Symptoms vary depending on which part of the brain is affected. They may include abnormal muscle contractions, complex repetitive movements, lip-smacking or chewing and swallowing without cause, forced turning of the eyes, numbness or tingling, and mood changes.  

My son had one obvious seizure at school three years ago. He had an EEG, an MRI, he was on Trileptal for a year  and he did not have any other obvious seizures during this time. He also remained “stuck” in the same RDI zone. After a year on the meds, his neurologist did a follow-up EEG, which showed up clear, so we took him off the meds. He seemed ok at first, but after a month or two we noticed some disturbing trends:

• His ability to read and use facial expressions, which was never great to begin with, completely went away.
• He started occasionally eating until he vomited.  The first time this happened it was 4th of July, and I thought he’d just eaten too many s’mores. After the third time it happened, I knew there was more to the problem. 
• His sleep patterns were disturbed. It took him hours to fall asleep, and it was really difficult to wake him up in the morning.

These were just a few of the more obvious things we noticed at this time. My consultant had been working with some other families whose children were suffering from seizures and she suggested that he might still be having problems there. They were seeing a doctor in the northern suburbs of Chicago who specialized in autism and seizures. He did a test called a brain SPECT, where they inject your child with dye and take a full color picture of the brain so they can see what is really going on.    

My son’s brain SPECT showed mild seizures in the center part of his brain. They were so mild that they did not show up on an EEG, but they were enough to affect his ability to read and use facial expressions, among other things. We started him on a low dose of Depakote which we gradually increased under our doctor’s supervision. It was not an easy time – we had lots of ups and downs. He would get more impulsive, more obsessive for a few days after each dosage increase but then he would suddenly improve.

At this point, he has improved so much. Last week we were making French toast. As he was cracking the eggs, some of the egg goo got on his fingers. He looked up at me, laughing, and said “Ewww!” It was the “engages in back and forth dialogues using only facial expressions” objective that had all but disappeared! I made a face back and said “Ewww!” He laughed, cracked the second egg, and purposely stuck his fingers in the goo so we could do it again.  

I am sharing our story in the hopes that it might help some other families out there who are stuck. I don’t claim to be an expert on seizures and autism yet, though I am certainly on the front lines learning all about it. Today I found out that my younger son, who is not on the spectrum, is almost certainly also having seizures. It hurts a bit, but at least I know where to go for help. 

The thing is, we knew that he was having seizures, but our HMO neurologist just did the bare necessary tests and stuck him on a drug that really did not help him. It was only after my consultant referred me to this other doctor, who is of course out of network and therefore out of pocket, but who actually understands the link between autism and seizures, that we finally had some results. So if anybody out there is working with a child who sounds like mine, who is bright and able to do higher stage things, yet can’t seem to get some of the stage 2 basics, this might be a route to check into. However, it is really important to find the right neurologist. My son’s doctor has read EEGs that clearly showed seizure activity, but the doctor dismissed it as “part of autism”. It is so important to find someone who truly understands how the brain works, and who is able to do the brain SPECT, and who will find the right medicine.  

Laurel Joss is an RDI® Program Certified Consultant in Chicago Ridge, Illinois. She has a master’s degree in early childhood education. She has two children, one of whom is on the autism spectrum and has been using RDI® strategies for the past seven years. Visit her blog at remediatingautism.blogspot.com. Watch for the Part 2 to this post coming soon!