The emergence of self-harming behaviors or why couldn’t I just leave well enough alone?

We had been getting a lot of feedback about Charlie’s behavior being spacey and him getting sleepy towards the afternoon. First, from his former preschool teacher, who took him on an outing over spring break. Then a couple questions from staff at school who work with him gently asking if anything had changed that they should know about because he seemed so sleepy. Finally, a few weeks ago his communication notebook came home with a very sweet note from his aide, who rarely writes in it, stating he was just very concerned about Charlie because of the sleepiness.

We had noticed it a couple times on the weekends. I had just thought maybe he was feeling sick and was falling asleep. We honestly don’t have much idea what it looks like when he is sick, since he often shows no signs of it. I also suspected it had something to do with the massive growth spurt he has been going through, which I can recognize because of the massive amounts of proteins he wants to eat – two hamburgers and a bowl of yogurt for dinner, kind of stuff.

But, with all this feedback I figured we needed to consult his doctors about his medication. He currently takes 1 1/2 mg a day of a blood pressure medication to help him feel calm and less impulsive. He started on this medication a year and a half ago at 1/2 mg per day with incredible results. When things fell apart at the beginning of the school year we increased it to current dosage, though I always wondered about it since it had no noticeable effect at the time and the turn around in his behavior this year has all been due to changes made by the school to better accommodate him.

So, I will admit I was happy to have a reason to try to drop his medication back. We consulted his developmental pediatrician, psychiatrist, and pediatrician all of whom said the medication was not likely the cause of the sleepiness, but since he was doing well we were free to drop him back if we wanted to try it.

I really wanted to try it. Charlie was very anxious about trying it.

When we first started this med with Charlie he was just a little over 4 years old. He was young enough he did not question why he was suddenly getting to eat a scoop of ice cream, with crushed white powder on top, with his breakfast every morning. The difference in him was subtle. But, you could see it if you were watching closely. He no longer had that look like he wanted to crawl out of his own skin because the sensations around him were so intense.

The nurse was very clear with me that I was not to tell him he was on it or I would spend a lot of time in power struggles with him refusing to take it if he was ever mad at me. We figured she had a lot more experience with this than we did, so, initially we took her advice. But, it never sat right with us. It felt very wrong not to be honest. We could not see how it benefited him not to understand why he was feeling the changes in his body. After all, we were trying to help him make more connections to his feelings and sensations, not be further alienated from what was happening to him.

So, we told him about it, in all the vast detail that he wanted. We told him of what we saw it doing for him, what the risks were for him if he did refuse to take it regularly, we even told him why we hadn’t told him until now and apologized for leaving him out of the loop. It flies in the face of so much parenting advice, I still feel a twinge of guilt typing it. I can hear a parenting expert somewhere groaning about parents relieving their own guilt by burdening their kids with too much adult responsibility.

These people don’t know Charlie. They don’t know that he is already anxious and confused about the world much of the time. They don’t know that knowledge and a say in things at a level beyond what most kids should have are the best ways for him combat his anxiety.

All of which brings me back to our present. We lowered his medication to 1 mg per day. We let him know we were going to do this and why we thought it was time. He was very anxious about it. He kept telling us he was worried about not feeling calm anymore. We kept reminding him that it was not the medication that helped him calm down at school it was him using his tools and the school changing the way they were handling things for him.

The first day that we lowered his meds he did something I can’t remember and I told him firmly and calmly I was very disappointed in his choice. A few minutes later I walk into the room where he was and found himself pounding himself in the forehead. Over the next few days he increasingly began doing this whenever he was frustrated with himself, ramming his head into (soft) things, biting his forearm, smacking his forehead. The school states since we have dropped the dose of his meds the sleepiness is gone, he has been even more social with other kids than previously, and they have not seen any behaviors of self harm. In fact, they wondered if he isn’t imitating some of the kids he sees when he goes into the self contained class in the morning to use the sensory equipment.

I have alternately tried to hold and comfort, use deep pressure touching, ignore, and discuss the new self harming behaviors with Charlie but all of it is met with him telling me that he can’t feel calm since we changed his medication. I remind him of all the work he has done that has nothing to do with medication and that he is still on the medication at twice the dose he initially took to feel calm last year.

The pediatrician has told us, of course, that we have created a placebo effect, by informing him of the change. Maybe so. It still makes no sense to lie to him to me. He is in the end our most reliable reported to the way his body feels, even if he can’t always figure it out.

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10 comments on “The emergence of self-harming behaviors or why couldn’t I just leave well enough alone?

  1. Oh dear, I am really sorry to hear of this. Emma began hurting herself in response to being unable to tolerate waiting or not being able to find something she wants or being told she cannot do something she very much wants to do. She will sometimes go into her room or try to hide that she’s doing it, but when she is very upset, she will punch herself hard in the face before any of us are able to stop her. Usually though she will bite her arm or hand. When she was younger she would bite herself so hard she would break the skin and sometimes even bleed. It is always deeply upsetting to witness. We have tried many different things to try to teach her other ways to cope, but none have given her the same relief (I’m guessing here) that hurting herself seems to. It’s an odd choice of words, but it’s as though she is trying desperately to control the pain she is feeling and hurting herself is less painful than the situation causing her such upset. She has not bitten herself for at least a week, but it is an ongoing problem that I continue to be at a loss as to how to help her and so far no “specialist,” doctor or anyone at her school has been able to do anything that has helped either. I have reached out to a couple of Autists, but none have any first hand experience with this.
    I hope you are able to help Charlie cope better. If you do, let me know!

  2. My son is on a liquid form of medication for the same thing. He has also been very sleepy and lethargic in the last 30 days. He takes a dose that lasts 4 hours which gets him through school in the morning. Then, at noon, I give him a second dose to get him through another 4 hours of ABA. Here’s the thing: he’s been so lethargic and non responsive in the afternoon that the tutors have been ending his sessions early. So, I cut the afternoon dose myself and he has not been as lethargic but he has begun with yelling and more defiant behavior since.

    Someone suggested to me ( since I posted that this regressive type behavior seems to be a pattern every year around his birthday which is late May) that it might be something as subtle to us as the change of season and the amount of daylight hours!

    My son tends to do this little regressive thin until after the birthday which is similar to his dysrgulated behavior around Christmas time and I thought it might be routine disruption. Perhaps for Charlie, he too is affected by the hours of daylight which comes with the change to summer? Just a long rambling thought.

  3. Up and down, round and round, sometimes to the point of being dizzy beyond belief, then add questions, concerns and doubt… that was 8 years of the medication roller coaster. More than ANYTHING, trust yourself, trust your instincts and do what YOU think is best because YOU know more than anyone what is best for Charlie. He will make it through this, as he has made it through each trial that has come before and will make it through each trial yet to come. But remember to keep yourself intact because you are his glue and honestly, it is tough being the glue sometimes! Hang in there girl. One day you will wake up and see a grown man and you will look him in the eyes with a pride and a love that washes away all these trials and you will say, “We did it.”

  4. Medication changes, even just dosage changes, can be so disrupting. Go with your gut. The meds affect each kid so differently I truly think the professionals are playing a guessing game most of the time too. We just went through a rough change with Justin, and my husband kept reminding me we were trying to make things better, and to hang in there. We eventually figured it out, and I know you and your husband will too. Just know you’re not alone!

  5. I see fine comments above me saying “go with your gut.” add my voice to them.

    We have not given our son meds (yet!). But I cannot imagine not telling him about it. We discuss these sorts things with him. He might not have a choice because he is a child, but it is still his body and his mental well being. Building trust and respect is important. My mother always told me about any medicine I took, even when they were anti-deppressants. I appreciate that deeply. You know your boy. Rock on.

    This is a side thought–if your boy feels sleepy, could they do some OT therapy with him to boost his energy level? Everybody has an energy dip around 1-2 pm. My son does the “what is your engine speed” program and some activities really help him (and me) out of the afternoon slump.

    Best wishes to you.
    Lori

  6. This is brutal, and I theorize that the pediatrician is WAY off about the placebo effect. Good for you for going with your gut. These kids are so logical. And, they have to grow into adults. I think it’s very important to know which treatments are helping them and how. Stay strong – it sounds like you’re in tune with your intuition & I admire you for following it.

    I think this is so darned cute, btw – “He was young enough he did not question why he was suddenly getting to eat a scoop of ice cream, with crushed white powder on top, with his breakfast every morning”.

  7. Pingback: A-words: Anxiety | halfpastnormal

  8. Self-harming behavior is never intended to be self-harming. I have a feeling Charlie was stressed and anxious about the decrease in his medication (which might have seemed to him like a change in his routine that could have led to unpredictable consequences) and was stimming because of that. I think it is important for parents to realize that “self-harming” behavior is a myth. There is always a rational explanation for it. It is important to know that so that the parent can respond in the right way. I think if an autistic person is stimming in such a way that they might do self-harm and someone tries to forbid them from doing that it is only likely to create more stress and make the problem much worse. But the autistic person might not realize the source of the stress that is making them stim like that.

    It seems especially obvious in this case since it was his forehead. The forehead is a major stimming area because the forehead has lots of nerves, many of which help to relieve stress. Different pressure points on the forehead are used in acupuncture and acupressure specifically because those pressure points help relieve stress. I discovered that many years ago and I still sometimes knock on my forehead with my knuckles and get strange looks from people when they see me do it. What appears to be self-harming behavior to one person might actually be stress relief to the person doing it. Discouraging someone from relieving their own stress is only likely to increase the stress and turn into the self-fulfilling prophecy of self-harming behavior.

    Here is an interesting blog post about (what seems to me like) an over-reaction to self-harming behavior. http://aspierhetor.com/2011/12/27/thats-just-your-autism-talking-and-other-phrases-that-shouldnt-appear-in-an-autism-essay/

    • You make a great point, as always, AspirKid. This is an older post and i can only say the first time I saw this behavior it scared the hell out of me and I started to fear all the worst of what this could mean, which sends me into a tailspin and I think my main task in parenting always needs to be to react only to the situation in front of me and not starting reeling about all it could mean down the road. I think at the point of this being written, with the med change, you are dead on that it was largely a stress response. He still does this from time to time, the pounding his forehead. It is always in response to his perception he has screwed something up, sort of like I might tell myself I’m an idiot over and over in my head. I have learned he does not do this to the point of real damage and that in that moment he can not hear me comforting him. He has to work through the feelings himself, so these days I do leave it alone even though I admit it is painful to see him do it. I had read the aspierhetor piece before, in fact I’ve read her entire blog, I think she is brilliant.
      thanks again for checking in, I always love your input and I love that you are willing to challenge me, that is a true friend.

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