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Living with Autism


June 25, 2011

Medical mysteries: autism and chronic self-injurious behavior

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryIt'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. 

Clue: 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 and discomfort. 

People with autism may even feel pain MORE than we do, but have a higher TOLERANCE for it, thus enduring the pain for longer, until they finally blow up and have an extreme behavioral meltdown. This seems to be the case with my son, for sure. He often won't present as we would if in pain, until the pain is so bad, he has a complete meltdown. Reason, higher tolerance for pain. That doesn't 'mean they don't 'feel pain, just a higher tolerance. 

 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). 

Non Verbal people with autism 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”, (OCD type condition) 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, topography, and other things. 

In 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 (that backfired, as it led to tongue tremors, then he needed Cogentin as antidote)

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, but it seems self-abuse is a form of communication to relief the stress of how the person feels DUE to dysregulation of neurotransmitters in brain. 

9. More research needed into creating medications that target ways to enhance brain functioning, as per DNA testing, to see what is the underlying reason, many people with autism are "non responders" to a plethora of medications? 

10. More research needed into how the immune system reacts to stress in people with autism, and how that reaction can influence behavior.

11. More pharmacogenetic testing by psychiatrists treating people with autism to help increase health and lower costs of repeated hospitilizations that lead everyone in circles. 


Bonnie said...

Kim have you guys tried a Vibramat? You can put it under a bean bag or he can lay right on it and it provides soothing vibration it's switch operated. I am thanking God for this break in his behavior and am praying for your family.

Anonymous said...

Hello Kim,
My wife and I stumbled upon your blog and we are heart broken for you and in a strange way are encouraged to find out we are not alone in this experience. Please know that we will certainly be on our knees for your family. We too are parents of a boy with severe SIB. He slaps his face, too many times to count, even if some applied behavior therapist asks us to. The sound of any of our other kids even clapping sends us over the edge. Anyway, if there were a way to speak to you or communicate with you it would be great.

Anonymous said...

I forgot to leave you any contact info but certainly can if you have the time to talk.


By the way my son is adopted, his name is Cooper, he is 5 1/2. And has had SIB from the day we adopted him almost 4 years ago. My wife and I laughed and cried reading some of your posts, we can so relate.

Wolfie said...

I'd love to meet Jamey if there's any way that could possbily happen. email me at meagan.wolf18@gmail.com

Simona said...

Hi, my name is Simona, I am italian and my brother Davide, 26 years old, is autistic.
He's been hitting himself since he was 13 years old. Until he was 20 his SIB was sporadic, it occured only when he was feeling bad or if you asked him something to do and he didn't want to, in changing situations like going out or come back home while we were walking around, for example.
After he got his diploma at high school, things changed. We didn't know what to do also because in Italy there are 4 or 5 centers totally for autistic adults and it is really hard to access them!
2007 was the worst year ever since the SIB became permanent and we couldn't stop it, he weared a boxer helmet for 4 years, except when he was sleeping (he's followed from a center in Rome, when he goes on vacation with them, he never beat himself, because he's always busy with different tasks, so he loves vacations)My father managed to convince him not to wear the helmet during the night, especially in summer.
He had 3 ear surgeries. He had twice his eye black (he needed only 5 seconds to cause it)for us was terrible, and you know it.
Finally, in 2008 we found a fantastic center in the country side, not too far from our city, he goes there everyday and he does lots of activities with other kids.
He had, anyway, ups and downs, especially at home, even though he comes back from the center tired, he gets nervous at home. Last year we met a miracle since he was really happy and he didn't hit himself anymore, just few days but we could manage the situations. Unfortunately, he started being nervous again 1 month ago, without a specific reason, he screams a lot, he stiffens suddenly and starts to cry and tries to hit him. It not depends from himself, we know it, it's something psycological, because he showed us lots of times that he can stop if he wants. But now there's no reason, when he feels bad like headache, teeth pains, etc. he writes it to us (he communicates mainly through writing)but now we don't know what's going on. He also suffers of epilepsy, which is under control of medicines, so it's been 8 months that he doesn't have a crisis/seizure, but he stiffens several times during the day. My family is based in Italy, I've been living in Washington DC for 8 months so I would love to meet someone or talk to someone who solved the SIB problem! Please feel free to send me an email to simona.palummo@libero.it , thanks!

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