Medical mysteries: autism and chronic self-injurious behavior

It's been a week since my son’s last severe self-injurious meltdown, and all I can say is that despite all my intellectual analysis and constant research, I, along with doctors, can find NO concrete reason as to WHY he suddenly went into a 4-day bender of non-stop head hitting last week, and then, after numerous interventions to stop it, finally stopped. This isn’t the first time this has happened. Now sometimes it will happen, and you’ll find out he has a UTI, or a blister or ear ache that is hurting him. Not this time. Doctors found nothing. Did CT scan of head. Chest x-ray. Blood tests. Body checks. Nada. He just stopped hitting.

And he hasn’t hit himself ONE time in 4 days now. So, once again, I study everything that went on before, during and after that could give us some CLUES. The only thing that jumps out at me is auto-intoxication. This happens when the autistic person is constipated. He had been constipated. Now, for us who aren’t autistic, this may seem a little dramatic. After all, when we’re constipated, we don’t punch ourselves. But you have to understand autistic persons like my son. They don’t understand how to process pain. They either under or overreact to pain. And it’s more than that. Pain often begets pain. For example, constipation makes him hit himself. Hitting himself releases more pain which then triggers more head hitting and then turns into a full blown head punching meltdown that can only be stopped by changing brain chemistry, stopping pain and offering him constant comfort (massage, warm baths, etc…). This is no easy task.

Auto intoxication itself changes brain chemistry. Hence, if you fail to clean/heal the body, but still introduce anti-psychotics or other drugs for self-injurious behavior, you only ADD toxins into an already toxic brain and body fueling the self-injurious behavior (SIB). Of course in the midst of witnessing a self-injurious autistic person suffering, or stuck in a health-damaging cycle of self-abuse, doctors want to stop it. All they know is to give drugs to stop it. That’s all doctors are trained to do. They don’t often look for hard to detect bodily issues fueling SIB in the autistic brain. Things like impacted bowels. H-pylori. Deviated septums.

You have to dig deeper into the lives of autistics with self injurious behavior (SIB). These autistics are more complex and delicate than persons with higher functioning autism who have milder behavioral issues. Indeed, there are medical anomalies about autistics with chronic self-injury that have yet to be discovered.

For example, one clue is there is unusual NMDA, dopamine, serotonin and/or peptide regulation in severe autism with SIB. What’s more, receptors often get “stuck”, in the brains of autistics suffering from self-injurious behavior.

Stopping SIB in autism is a bit like fighting fires. You don’t just throw water on a fire. You have to look at wind (which could vary throughout day) temperature (which can change hourly), humidity, and other things. And in the same way strong wind velocities may drive fire behavior to extremes, so it is with self-injurious behavior in autism: The stronger the fuels driving the behavior, the harder you have to work to put out that fire.

Things that may have helped him come out of last severe SIB meltdown:

1.              Temporary restraints to protect from severe bodily injury that would cause pain and thus, trigger more self-abuse

2.              Green drinks to alkalize system during constipation

3.              Warm baths with aromatherapy (lavender and jasmine) to soothe and comfort olfactory senses and calm brain

4.              Abilify (aripiprazole) [D2 & 5 HT 1a receptors--partial agonist] low dose BID, for 2 days

5.              Walking to release stress (took 2 staff)

6.              Holding vibration tube (with assist, since during a self abusive meltdown he can slam vibration tube into his face or head if staff is not also holding tube)

7.              Unceasing PRAYER—even angry prayers that you may not think get answered. God is bigger than our anger, frustration and pain

8. A plethora of undetected, unclear reasons that are yet to be discovered

Now this is a Bad Day

Day began at 0700 when I received a call from home health nurse saying my autistic son had been punching himself all night and nothing was stopping him. Not good. Then around 0900, I received a call from Regional Center, saying the supervisors hadn't approved my son's POS (purchase of service) so he can't start his Adult Day Program this Monday. Oh that's nice. "Supervisors should have  answer for me sometime next week," said my son's social worker. Nevermind the kind, efficient social worker had informed these SAME supervisors MONTHS ago, that my son would be exiting Special ED and going into adult day program and it was CRITICAL due to his severe autism, to have everything set up and ready to go, so he's not off routine! Well, they could care less. And If you know anything about California Regional Centers--and the kind of people that often work there-- you know what I'm talking about. These supervisors/ administrators are among the most irresponsible sluggish people I have ever met.

The idea you can work for an agency that is involved in serious issues like behaviors in severe autism, yet act like there's a century to spare before they make a damn decision, is unreal.  From respite to after school programs to nursing, regional center has often f-up my son's stuff. I mean it's bad. I can't tell you how many times I have had to fight or correct these clueless cubicle dwelling dips. And doesn't it always seems the higher someone gets in Regional Center, the more clueless and useless they become, as if they detach themselves from other people's reality and remain couch locked in their offices. Surely, they can do better. I like Regional Center social workers, they are way more in touch with the clients.  But that's another blog.

Meanwhile, nurse that was supposed to show up for the next shift didn't show. Apparently, a message was left, but I never got it, so now I am forced to do shift. Before starting, I hurry to make coffee. A few minutes later, I see coffee grinds overflowing and spilling onto the counter. So, now I'm getting dressed and as I put on my pants the button flies off and on my way out of my room, the string from my sweatshirt hoodie gets caught on door hinge and pulls the string out of the hood.

An hour passes, I'm still trying to calm my son down. I grab sensory tube vibrator. It's not working. Batteries are dead. Problem is, I can't go to the garage to get more batteries because I can't leave my son alone, since he's punching his head. I also can't walk with him to garage, since he's dropping on floor and refusing to walk. He appears 'stuck' in what we call "major SIB mode." Or "crazy SIB" mode. As I wrestle to get my son off the floor while at the same time trying to protect his head from the incoming punches, I knock into the mirror on the wall. It falls and shatters. This is frigging wunnnnderrfull......now I'm worried about the damn glass. This goes on for quite some time and at some point rescue meds are tried (AGAIN) to see if they will quell this constant head hitting. It is not easy trying to inject a 5'8" self-punching autistic person with rescue meds.

Rescue med ativan fails. SHIT. Punch. Punch. Punch. I've got the karate helmet on him. Posey restraint mitts. Protective gear doesn't stop the punching, but it reduces risk of severe injury from constantly clobbering head and ears. Morphine is tried, with assumption there is undetected, underlying pain. It's given. I wait. Morphine fails. He's still punching himself, and now SIB getting worse, as if drugs making him more self-abusive. This doesn't always happen, but on this day, it did. Prescribed drugs and a plethora of interventions are useless. Nobody knows why. He was even breaking free from temporary restraints.

Another hour passes. I drag him into hot tub as I KNOW the one place he is always content, is in water. My lower back hurts. In the water, he's vocalizing loudly, splashing. Good, maybe I can relax a minute. Then he does something I've never seen him do in 20 years. He decides to step on the hot tub step facing the big pool and looks like he's about to go over into the big pool. I jump in the hot tub with my shoes and clothes on and pull him back.
At some point I manage to get him back out of hot tub. Immediately, I work quickly to pull off his wet clothes while he's punching himself. It's not easy undressing a person while they are punching their head. I work even quicker to get back on the karate helmet.

Now I have to put on his diaper, while he's in full blown SIB mode. This should be fun. Punching the hell outta his helmet with an occasional punch and jab into his rib cage area. Of course, I am trying to block as many blows as humanly possible, and getting really pissed off that I can't stop this terrible behavior. Or that experts and professionals don't seem to be able to prevent or stop it. And as I ponder this and the thumping and pounding of my son's fists into his helmet burns into my brain, I get angry at God. I don't know why I always get angry at God when my son goes into these 36-48 hour long self-punching fits. Maybe it's because I'm tired of praying and asking God to stop this behavior and heal my son. Maybe it's because the psychological torment of witnessing your own child smash his fists into his head for over 20 years, is taking a toll. Or maybe it's because I have always thought God would be my hero. Or shall I say my son's hero. YEP, I've often hoped and dreamed that GOD would just snap his fingers and stop the elusive and pernicious SIB that has plagued our family and held my autistic son captive for years. I guess it's the disappointment in God that angers, frightens and hurts me the most, because let's face it.... if you can't even depend on God.... who the hell can you depend on?


So this non stop SIB goes on and on all day long with no end in sight and at one point I run into bathroom and punch my self in the face several times. I don't know why. I don't really care why. Nor do care to entertain the genetic or psychological reasons behind it. All I know, is it just felt better than the confusion, hopelessness and insanity of the situation. Yes, I actually felt better--energized-- after the hitting. It was like a release. I wonder if that is how my son sometimes feels, though I doubt it because he sometimes cries when he's hitting himself. From years of observing this bizarre behavior called SIB, I think that the autistic person suffering from  intraccable SIB can't process the world around them. It's all in the brain. The world doesn't make sense to them, and they learn to live with it, but there are times, it becomes, for various reasons (that could include undetected pain or illness) too much to endure and they present with extreme SIB. A lot of self-injurious, severely autistic people move about this world as if on a teeter totter or scale and when one side gets too heavy, or is tipped in another direction, everything goes upside down and inside out. Indeed, the slightest change in diet could bring on a stomach ache that triggers a few head punches, that then trigger more punches that evolve into a full blown SIB meltdown. Nurses working with my son do their best to keep him at "homeostasis" but it's not always clear what tips him. Sometimes you can find a blister or discover he has a tooth ache, other times you don't know and the only way to know is bring him to hospital and have them do tests.

Okay, so the day. The day went on. I didn't pray because I'm tired of praying. I did do a lot swearing, especially when I was feeding my son his lunch and he punched the food out of his mouth, despite being hungry, calm, and receiving the food fine the previous minute.

Now there is food splattered on the chair and floor. My Australian cattle dogs love when Jamey eats.

Later, when night nurse arrives, I can't wait to leave. I drive to Big Lots, where I find myself incredibly irritated with a teenager who is pretending to play drums with his fists on a box. I hate that sound. That thumping. It always sends me into responder mode. Respond. Grab hands. Stop the punching. Protect head. There's a man in the store. A very strange man. One that keeps slipping behind the sofas and putting his hand in his pants. Oh this is just wonderful......

I later get fast food. As I'm eating, I feel a weird sensation as I'm chewing. It feels as if there is a rock on the left side of my mouth. It wasn't a rock. It was my crown. Lovely.

Early evening, I try to log onto Internet. Computer not working. ERROR. Then, when I think it is working, I realize the IPOD I'm charging on computer is causing my screen to freeze and all I can see is that stupid swirling blue circle that you know is never a good sign. Battery is also low on computer because the cord is malfunctioning. Thank you made in China.

Done with computer. No patience for this now. I grab dog leash and call for my favorite dog. When I'm about one mile from my house, I hear the familiar steps of my other dogs who are now panting and happy they tracked me and the other dog down. Problem is I have only one leash. Australian Cattle Dogs are not the kind of dogs you want off leash when walking. So now I have turn around, quickly, and get home. As we're jogging home, I trip over a rock, almost fall and then the one leash I have malfunctions. It's one of those retractable types. It wasn't retracting. It also appears to be a weapon, when extended, as it seems capable of slicing off your arm.


Back home, I decide to take a bath. Water is cold. I don't know why the water is cold, especially since we had a hot day and we paid for solar. I get out of bath. As I get out, I knock into the library book I've checked out, and it falls into cold bath.  

I later open a bottle of syrah and microwave organic vegetable lasagna. I find a good movie. I get into bed. Not for long. Remote control batteries are dead. I lay lasagna on night stand. I go downstairs to get batteries. When I come back, one of my cattle dogs, apparently the one that is always hiding under my bed, is eating my lasagna. And he's almost done.

I took an ambien. Goodnight. And yes God, I'm still mad.  I'm Sorry. I'm just tired. And as I say that to myself, the dog--who is again under my bed, lets off a lot of gas.