Broken Nights and Lost Days: Inside World of Severe Autism

Addressing the Mystery of Self-Injury: A Parent’s Struggle

The Unexpected Onset of Unusual Behavior

It was a regular early morning at 5:23 AM on February 1, 2009, when an unexpected occurrence disrupted the peace. Jamie, a young individual with health conditions, began displaying self-injurious behavior. Unfortunately, this was accompanied by abnormal seizures, a previously unseen phenomenon. An attempt to control the seizures was made by administering 10 milligrams of Diazepam, a medication known for its anticonvulsant properties. However, this did little to halt the self-inflicted harm.

Jamie appeared to be focusing his attacks on his ear, an area previously damaged in a group home. The motivation behind this behavior was unclear. What was more baffling was the abrupt onset of this self-injurious conduct after almost five days without any such activity.

Changes in Medication and Behavior

Jamie had recently been weaned off Depakote, a drug used to treat seizures, and had started on Lamictal, along with Ativan, as required. The latter was occasionally used for attacks and to manage self-abusive behavior. On the night of the incident, Jamie was given Diazepam as a fast-acting rectal gel since waiting for Ativan to take effect wasn’t an option. As a result, his behavior was erratic, characterized by a wild look in his eyes, starkly contrasting his usual demeanor of laughter and contentment.

Uncertain Health Status and Need for Medical Investigation

Jamie had been mysteriously losing about 25 pounds over the past four months. A CT scan of his abdomen revealed only fecal impaction, which was addressed subsequently. Repeated attempts had been made to persuade doctors to conduct further tests. One such procedure was an endoscopy, which unfortunately lasted only 30 seconds due to Jamie’s reaction to the sedative and thus did not provide any substantial insights.

Despite the lack of clear medical evidence, Jamie was suspected to have undiagnosed gastrointestinal issues. However, medical professionals seemed to dismiss this theory. An alternative suggestion was to conduct a PET scan to investigate possible brain anomalies.

The Struggle with Doctors and Psychotropic Medication

Over 17 years, numerous consultations with medical professionals had yielded little more than prescriptions for various psychotropic drugs. Jamie had been treated with Risperdal, Prozac, and other medications like Naltrexone and Clonidine, none of which had effectively curbed his self-abusive behavior. This resistance to the drug suggested that Jamie might be behaviorally fragile, where even the slightest discomfort could trigger self-injury.

The Challenge of Restraints and Search for Answers

Restraints were not entirely effective as a means to control self-abusive behavior. In addition to the physical strain they put on Jamie, they also presented a constant cycle of restraint, self-injury upon release, and condition again. The need of the hour was not to control the symptoms but to understand the root cause of such behavior. The change in his countenance indicated that there was more to his actions than what met the eye, a mystery that required diligent medical investigation to solve.

DrorAr101

My name is Adi, and I am the proud parent of Saar, a lively 17-year-old who happens to have autism. I have created a blog, 101Autism.com, with the aim to share our family's journey and offer guidance to those who may be going through similar experiences. Saar, much like any other teenager, has a passion for football, cycling, and music. He is also a budding pianist and enjoys painting. However, his world is somewhat distinct. Loud sounds can be overwhelming, sudden changes can be unsettling, and understanding emotions can be challenging. Nevertheless, Saar is constantly learning and growing, and his unwavering resilience is truly remarkable.

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23 Responses

  1. marley924811 says:

    @CDFoakley I’ve been watching your videos for quite some time as I was looking for people who were dealing with the same thing that I am with my son. I am amazed at your courage to deal with this everyday and you are honestly an inspiration for me to keep trying and pushing through the daily struggles I have with my autistic son. Thank you so much! Do you take part in any type of support group? I’d love to hear what kind of insight you have into this and any tips would be great:)

  2. CDFoakley says:

    @SuperMissblueeyes Effexor is actually a good drug but with autism and seizures it can lower seizure threshold. I considered re introducing effexor at lower dose if we couldn’t get self abuse lowered. However, nicotine patch has been the best bet so far…we’ll see.

  3. CDFoakley says:

    @cyclenut Interesting insight thank you.

  4. aureliefregeau says:

    Do you usually like the boxing cap on at night as prevention measures?

  5. smasherhits says:

    Get him off the pharmacueticals for a start to help him

  6. smasherhits says:

    Is he on a Gluten (Wheat) and Casein (dairy) free diet?..That will help alot

  7. cyclenut says:

    I am high functioning autistic. Sometimes I am like him, but not for long periods. Usally during high stress or abuse, but sometimes out of no where. My world shrinks and I tend to focus on things – staring- then hitting myself or other self abuse. Once in that state it is hard to pull out of, I have to let it go through the cycle.
    I don’t know about your son, but for me – drugs make everything worse.
    For me, I hear words, but they are not a direct route to my thinking mind.
    Bless your family

  8. SuperMissblueeyes says:

    I’m shocked at the behaviour of drs & nurses in some of your posts & that they’ve left you struggling for so long with no answers for Jamey’s physical pain. I’ve worked with people with autism, am studying for a degree in health & social care (I’m about to begin my 5th year), & I’m currently doing a course on autism. Have you tried anti-depressants like venlafaxine? The thing about that group of drugs is that they’re also great for anxiety. Just a thought, it may help until you get answers.

  9. mdak91 says:

    Get police-issue handcuffs, and try this method watch?v=Gvyq8zJtdow

    I know it’s cruel but he won’t even be able to hurt his hands like that

  10. CDFoakley says:

    @prw3535 I’m sure McCarthy’s doctor is excellent and I agree with all that stuff, but it’s hard to relate to her case. Her son appears very different than my son, and others with severe autism, as far as the behavioral issues go. But yes, I agree, with a lot of what she says regarding alternative ways to treat autism, as conventional methods seem largely ineffective for many autistics.

  11. CDFoakley says:

    @mdak91 Been there. Done that. He broke out of them. Unreal.

  12. mdak91 says:

    you really need a pair of handcuffs

  13. mugglenz says:

    My 5yr old is a non-verbal Autistic, he is pretty happy kid, but when he is unhappy or frustrated he hits himself on the head, enough to then make himself cry. We try and work out what the cause of the unhappiness is which of course is hard, its kinda like when you have a baby, and have to guess based on what you know and you go is it hungry/tired/cold/hot/bored/thirsty/needs nappy changed? PECS has been a boon for us, giving him a language of sorts.

  14. MrAmbidexterous says:

    okay, this might sound horrible, but i don’t mean it to be; maybe he would calm down with marijuana?

  15. quaker261 says:

    i might know but its just a guess.. im only mildy autistic but maybe its becos he has oversensitive stimuli like me.. sometimes if i here a little noise or if soemthing is different its too much and i have to cover my ears cover my face and hit me self to block out the input. because itss like having a severe migraine inside ur head and it wont go away.. its horrible. the only way u make it go is by doing something eg rocking handflapping or sib. to block it out. just my opinoin.

  16. TypesEvilAspieEyes says:

    @CDFoakley,, have your tried weighted hats??

  17. NathanShadow5 says:

    I know EXACTLY what she goes through. And until I seen this video I felt completely ALONE in this way of life. My son is 18 years old, does the self pain inflicting thing and yet some days he doesn’t. I have him on NO medications what so ever. I don’t believe in the long term use of them that they do any good, but more harm to their already ‘senstive’ systems. I do however give my son vitamin D3 which calms him down and helps him sleep many times, I also give him Calcium/Magnesium powder

  18. CDFoakley says:

    @prw3535 He was hitting himself way before we had him on Lamictal, but it’s good to rule out all possibilities in this neverending puzzle! I still think it’s all in the brain and gut….

  19. prw3535 says:

    I agree with Dr. Krigsman, or Dr. Bock or Dr. K in LA, Jenny McCarthy’s biomed doctor. Biomed can help your son, you are right about his gut. You are right to be pissed for 17yrs of no answers. Biomed should give you some.

    ps, lamictal just was studied and linked with seeping folate from the brain, maybe that is why he is hitting his head?

  20. CDFoakley says:

    @MsBeth890 YES< YES. I agree. It seems many times our son has had his worst self injurious meltdowns, I can trace it back to impacted bowels or caregivers NOT feeding him what I’ve said to feed him and he gets constipated and sick. He’s not this skinny right now. We’ve got his weight up with power purrees. But I am in TOTAL agreement that there is something going on with bowels in many autistic people that is causing a lot of pain.

  21. dragonsammy1 says:

    @CDFoakley Some people don`t understand what you go through on a daily basis

  22. MissEmilyS1 says:

    Thank you so much for sharing your videos! I have one question. Is he hitting himself because he wants to hurt himself or because he cannot help it?

  23. jwebs94 says:

    Have you tried medicinal marijuana?? if not check out uf4a.org and get in touch with Mieko, ASAP.

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