AM/FM

Recently we have been struggling to interpret some maladaptive behaviors our 16-year-old high-function autistic son has been demonstrating. He has been having episodes where he is profoundly disconnected from what is going on around him, he stares off, becomes non-communicative, startles, shakes, cries, wanders, can’t comply with instructions, can’t attend classes, can’t tell us what is wrong, has left school (eloped), mumbles/moves his mouth weirdly, or falls asleep. It has been scary and frustrating. We worried about seizures, but extensive neurologic testing ruled them out. We hypothesized about dissociative disorders or severe panic attacks, but nothing makes sense or adds up. We have manipulated medications and added intensive therapy. The episodes continue to come and go. He can have periods of weeks to months where he is functioning fine and then bam…the wheels fall off. Sometimes he can get back on track and sometimes he can’t. Sometimes he just snaps out of it and sometimes it leads to a progressive, downward spiral of anxiety and hopelessness.

He essentially missed the entire second half of his spring semester last year and has fallen off the academic track he was on. Special education team members have been tying themselves in knots trying to come up with behavior plans and safety measures to manage him. As his parents we have been distraught watching as the gap between our son and his same-aged peers seems to grow exponentially. Our frustration, heart-break, and worry has been almost unbearable.

For two days this week, our son demonstrated the behaviors I described above at school. Day one, he was sent home from the nurse’s office after collapsing in a bean bag chair in his support class room and refusing to get up and go to class. The next day he remained in school but was unable to attend his normal class schedule. His current behavior plan follows the model of negative consequences being applied for non-compliant behavior (i.e. not going to class or not being where he is supposed to be). Thusly he received two detentions for failing to attend his classes and a referral to the principal for corrective counselling. As his parents we have a real problem with him being punished for something that appears so clearly beyond his ability to control and so directly related to his diagnosis of autism. The school disagrees; feeling that clear behavioral expectations, following the schools code of conduct as it applies to all students, and consistent reinforcement of the plan will modify his behavior. I wish it were that simple.

This afternoon something clicked for me as I turned the situation over and over in my mind for the umpteen-millionth time. It is like my son’s brain has two settings…like an AM/FM radio. When he is tuned to FM, he is plugged into the world around him. He is bright, engaged, alert, able to follow plans/instruction, and interact with the world in ways that are very close to neurotypical. But then there are times where, for one reason or another, his switch gets flipped to AM. When that happens, he is drawn into the deeper recesses of his autistic mind (and it does not appear to be a happy place). He is disconnected from what is going on around him, he is vibrating at a different frequency, he is upset/scared/confused, he can’t function in the way he normally is able to, and he doesn’t have the ability to flip the switch back on his own. Any system of rewards or penalties, prizes or punishments that make sense in FM mode, can’t reach him in AM mode.

So what switches him back? That is the million-dollar question. And of course, I don’t have the answer. Most times he just spontaneously flips back over. The awareness comes back into his eyes, something captures his attention in a meaningful way, and presto- he’s back. Sometimes if we are lucky, we as his parents have been able to draw him back out by engaging him in conversation regarding something he is passionate about or getting his attention with a joke or a pointing out something interesting or bringing all the fuzzy pets into his room and putting them on his bed with him…but this fails just as many times as it succeeds. We try to find the triggers that convert him into his most autistic self. Sometimes there is one and we try to address it with therapy. Other times we don’t get anything. It is so incredibly frustrating for all of us trying to help him…but just imagine how terrible it must be for him. From what he tells us, when his brain switches over to AM: he feels intense fear, vacillates wildly from hypersensitivity to numbness, he wants to come out of it, knows people are trying to help him, but is unable to flip the switch back.

Today was a better day. He went to school. He went to all his classes. He served one of his detentions. He was happy and engaged. He had a good session with his psychologist. He laughed with his friends on-line tonight and was compliant with everything asked of him. He’s tuned back to FM…for now, and I am profoundly relieved. I hope he stays here for a while, but I know eventually the switch will flip again, and again, and then again. The second detention (and the next, and then next…which I’m sure will follow) won’t keep him tuned to FM. Although, they don’t flip him to AM either, so I guess it doesn’t matter. He doesn’t care. Philosophically and morally, it upsets us as his parents more because it implies that he is choosing to do wrong and is deserving of punishment. We just don’t believe that is the case. Now if he was in FM mode, didn’t comply or do what he was supposed to, and was being a typical 16-year-old boy turd, then fine he would deserve it- detention him up! That wasn’t the deal this week. But we are the adults and in the grand scheme of all we face on a daily basis with a child with special needs; there are battles we choose to let go of, so as to live on to fight another day.

Regardless, this new way I have of thinking about what we have been seeing in our son as he makes his way in the neurotypical world with an autistic brain has helped me during what has been a difficult week. It has given me a different understanding and I feel a bit more accepting of life as it is for him and us right now. Maybe it will help someone else, so I thought it might be worth sharing.