(originally written & published on April 25, 2013)
People are always asking my opinion about medication. Whether I think ASD kids should be on medication, what kinds of medication we’ve tried with my son.
And there’s kinda a lot of controversy within the autism community about this topic… And I just don’t get it.
Yes, my kid in on medication. I’ve written about it before. He’s currently on 2 meds (Depakote & Onfi) because he starting having seizures in May 2012. But even before the seizures, he’s been on good ol’ Klonopin for aggression/ behavior issues since September 2011.
Now obviously you have seizures, you take meds, that’s a no brainer (but guess what, most seizure meds are also mood stabilizers so we are reaping some behavior benefits as well).
But the Klonopin? The med we are giving him to tweak his behavior? Did I feel guilty about giving him that med? Um, no. He was miserable before Klonopin.
I would say Klonopin was the first prescription med that we tried on Kyle that was specifically meant to curb problem behaviors. Before Klonopin, we did lots of the biomedical things for years including the GFCF diet with little or no success.
And then in the summer of 2011, we had what I like to call “The Summer of Rage” where Kyle was pretty much a raging maniac. He would go thru multiple stretches throughout the day where he would hit & try to bite others, would try to injure himself. He wasn’t eating. He was extremely skinny. He just looked miserable pretty much all the time. He looked like he wanted to crawl out of his own skin.
We ruled out lots of medical reasons for this behavior. It was chalked up to just that, a behavior. He was just a miserable, unhappy kid. The 6 week summer school session in the summer of 2011 was especially bad. I would literally CRINGE when my wife would text me throughout the day, just waiting to hear another bad report from school…or how he lunged at my wife’s father.
The summer of rage can be summed up with this one picture.
That’s a picture of me after Kyle threw a fork my way when I was trying to coerce him to eat. And the 4 prongs went just above my eye.
So the decision to medicate was pretty easy. Our son wasn’t happy in his life. He couldn’t tell us what was wrong, but he wasn’t happy.
So we went to see a local psycho-pharmacologist who specializes in asd kids and she recommend two oldies but goodies. Klonopin & Thorazine.
I wrote about these two meds in a previous post READ) and I wrote…
“Over summer of 2011 Kyle was filled with RAGE. He was very violent and having multiple major meltdowns/ tantrums per day where he could be self injurious and hurt one of us. Starting in September, with the help of a psycho-pharmacologist who specialized is spectrum kids we’ve had him on low doses of two old school meds, 2 meds that if you use google will scare the bejesus out of you, 2 meds that were talked about in the book/movie “One Flew Over The Cuckoo’s Nest”, and 2 meds that have helped Kyle IMMENSELY…
The 2 meds? Klonopin & Thorazine…
2 scary meds, in very small doses that have rewired his brain a bit and improved Kyle’s quality of life and made him a much happier kid. He is NOT a zombie in any way. He is just Kyle but without most of the meltdowns/ violence…”
And the Klonopin he’s been on ever since. The Thorazine he’s been off since he started some of the antiseizure meds.
Anyway, back to your questions. People will write me and tell me about how violent their kids are or how unhappy their kids are, but then they’ll say things like “I don’t believe in medication” or “I don’t want to make him a zombie” or “I don’t want to change his personality”
You don’t believe in medication? What does that mean? Why exactly?
You don’t want to make your kid a zombie? You just wrote me that your kid only sleeps 2 hours a night, maybe being a zombie is just what he needs!
You don’t want to change his personality? This is my favorite. Your kid is attacking you & others. Your kid is injuring himself. Your kid is miserable. I think all these mean his personality needs A TON of changing! Or he might end up in jail in a few years…or godforbid worse!
Maybe it’s different with high functioning kids and/ or kids who are verbal. Maybe if my kid could express himself and tell me what’s bothering him it would be harder for me to consider medication…but I doubt it cuz medication has helped me.
I’ve written countless times about how I take the antidepressant Wellbutrin. It’s been almost 3 1/2 years now. You can read about my story about antidepressants HERE.
So maybe that’s it…Maybe because I’ve had success on antidepressant medication I’m more ok with giving it to my son. I dunno.
All I know is in my humble opinion when your kid is absolutely miserable for most of his day and you can’t figure out why, and you’ve ruled out most things medical, then I think it’s time to try some drugs.
And not all drugs will work… And some might make things worse…but you gotta try something to make your kid’s quality of life a little better. That’s our jobs as parents.
And am I worried about the long term effects? No, I covered that in another blog post (READ) when I wrote.
“…I talk a lot on here about trying as much as possible to live in the moment, live in the here & now. And I can somewhat control the here & now. I can’t really control the future….I will take a GREAT 12 month stretch now and deal with the possible consequences later, and I think if my son could tell us he would choose that as well…”
We took Kyle to a special needs dentist office this week. Not just special needs kids, but special needs adults as well…which is always hard to see.
Kyle with all his meds in his system was bouncing off the walls. He was having a rough morning…rare these days, but they still happen. As he was loudly stimming and trying to run away, I looked around the room at all the special needs adults, some quite low functioning, and they were all behaving great. My first thought? “Great my Kyle is worse than all these people here” My second thought? “Maybe they’re all behaving because they’re all drugged up” And then I thought “So what? Going to the dentist is a traumatic experience for many, including me, maybe a little extra drug is appropriate!” And I made a mental note to ask Kyle’s dr whether we could try an extra 1/2 Klonopin before dentist appointments… and maybe haircuts! 🙂
Anyway, I’m rambling so I’m gonna end it there. Now you know my opinions on this subject…
Peace Be With You…
THE END!
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We've not used meds (yet) but if the time comes so be it. Who am I to deny my child a better life because I can't get past medicating?
we used meds for a certain period of time when my son was younger, (from about 4-8) adderall for attention and risperdal to calm behaviours...and they worked - until the didn't, if that makes sense. We changed his school, he was in a great setting, thriving, but still being very aggressive. Turns out the adderall was causing that, and then we no longer needed the Risperdal! But I HAD to try...he was miserable and hard to handle without anything. I wonder if he sort of "outgrew" them, and that's why they no longer worked.
I've never understood parents that don't even want to try --- you wouldn't not try meds for other illnesses, but for some reason it's a polarizing topic in the autism community! I think if your child is doing well on them, it's a total no brainer!
Thanks for this post .. I'm an ASD mummy of 5 year old boy with 'rage issues' we are going through the process of establishing whether doctors want to medicate but I have already observed all the things you have mentioned including total refusing foods so it pretty difficult to control his diet!! His dad is concerned about medication as in UK where we live doctors don't like to medicate children under 8. Like yourself thought to see him less anxious & fretful would make my day!
Same here, 5 year old boy with severe behavioural issues, in the UK, his dad is also concerned about meds.
Having said that, my son takes sleep meds, but, they are now suspecting ADHD as well as autism.... They have talked about meds for his behaviour but as you say they don't like to medicate under 8's..... his sleep specialist is now suggesting meds might be the only way forward because they thought if they could get his sleep sorted his behaviour would improve and it isn't..... Good luck to you, hope you get sorted :)
Just thought I would shine a light at the end of your tunnels .... we are in the UK and at 5years 5 months our CAMHS team gave us the decision to dedicate our ASD / ADHD (& more) child with the number one reason being his persistent rage, hurting others, damaging property etc. We currently use Medikinet XL. Obviously with any medication it has side effects but we have our loving, calmer & happier little boy back! My partner & I sat in the room hearing the consultants words & didn't discuss their intentions between us, I asked my son if he would take the magic tablets to help him (a long discussion) & he wanted to give it a go. After all who am I to force feed him pills? If you know it will help, ask x
Try Marijuana.(edible kind) Same results, Less side effects.=)
My daughter had a summer of rage as well which ended with my nose broken by an electeric pooh toothbrush.her dr put her on meds two days later and we finally got sleep and no more broken noses lamps furniture some people can be so judgmental about meds but until you walk a mile in someone shoes.
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What did they give to her? I have been getting hit for the last 4 yrs and fear he will seriously hurt me. He currently takes abilify, intunive, and trazodone.
I work in a private school for autistic students. Some of them can't learn a thing; they are too busy attacking staff and other students, and sometimes hitting themselves. By the time they are 14, 15 years old it's a real problem. I've had students where I tried to work across a table from them so they couldn't hurt me, and all we were doing was playing on iPad, not even work. If your child has a ton of anxiety and/or aggression a behavior plan alone is only going to improve that SO much. I think it makes sense to try other things (new school or classroom? new behavior plan? B12 shots?), but at some point meds might be worth looking at.
Do you work at the Rebecca School In Manhattan?
We began meds at age 4. Some have come, some have gone but there has always been something and we are not sorry in the least. It was definitely a quality of life issue for him as well as us. He is 16, remains non-verbal, and developed seizures at age 14. In his case, was already reaping the mood stablizing effects of antiseizure meds so with the help of his neurologist we just increased one of the meds from the low dose he was taking for behaviors to a therapeutic dose for seizure control.
For the dentist, blood-work, MRI or any other "medical-related anxiety" we do medicate with a wonderful "as needed" medication completely different from his others so we don't reduce the effectiveness of the regular medicines.
As you say, maybe it is different for the high functioning kids who are verbal, but we have to do what our children need us to do to give them a decent quality of life.
LMH512
100% with you on meds, Right now on Depokate (seziures) and behaviors are more manageable. I have also went down bio medical path with little or no success so understand quality of life is more important then letting her suffer. I commend you for speaking out on this topic
My son stabbed me in the same spot with a fork a few months ago...I also started him on meds shortly after.
We went through a period of time when our then 13 yo was throwing out his meds. He pretended to take them and spit them out into a napkin later when we weren't looking. It turned out he didn't like the taste of the vitamin we were giving him but instead of telling us that he just decided he didn't need them at all. When his behavior got really bad, we found the thrown out medicine in the trash (bless the hubby for going through the trash can!) The good news out of all this was that when he went back on his meds and his behavior improved so markedly and life got so much better quickly even Joe realized that the meds were important. I don't think he's missed more than two doses in the almost 5 years since.