Autism: To Medicate or Not to Medicate? I don’t see the dilemma
April 25, 2013
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Now Reading: Autism: To Medicate or Not to Medicate? I don’t see the dilemma
April 25, 2013
(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…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
51 People Replies to “Autism: To Medicate or Not to Medicate? I don’t see the dilemma”
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Thank you once again, for just being your honest self. It is so refreshing to have it straight w/o all the "ideals" .
I think I would have made the same decision given the circumstances. But I've actually had an opposite experience – I have two boys with moderate autism. My oldest doesn't have any health problems but has had intermittent episodes of anger and injurious behavior. Several people at the school (not his primary teacher) urged us to consider medication. But we had his special ed. teacher work with the school psychologist and came up with a behavioral modification plan that actually worked! But the next year, he had to change to a different teacher and school, even though they they read the previous plan, they didn't really adopt it. So again, we had problems and they urged us to medicate. Again, we insisted on following the plan, and things improved. Our kids are actually pretty happy most of the time, but when they have their episodes, it can be tough. But everything I've read indicates that if a behavioral plan works, there's no need to medicate. We felt really pressured to use the medication option, even though we knew the problems could be worked out otherwise. So I agree parents shouldn't refuse to medicate out of irrational fear of medication, but on the other hand, they should stand up to pressure to medicate if it can be proven other methods can work. There are serious side effects to many of the medications, so they should really only be used as a last resort.
Ok I have an almost 6 year old boy who has autism I would say it is moderate not severe but not high functioning. We have all the problems listed insomnia ,hitting, pinching( my arms are scarred something terrible). I have considered Klonopin but I have no idea how I would get him to take a pill. We use Melatonin in a liquid form and have to hide it in juice or he will eat the gummy version sometimes. When I have to give him an antibiotic or something I have to use a baby medicine dropper and me and my husband restrain him and force it into him. Not to mention he physically overpowers us both . I am 5'8" and 175 lbs and my hubby is 6" and 230 lbs and this little kid is stronger then both of us together so….I have no idea how to get him to take a pill. He is also a very picky eater so hiding it in food is not an option. any ideas will be greatly appreciated. Thank you
If the doctor said was ok we would crush her pills and disguise it with her fave, chocolate pudding. I know that is not a good breakfast but desperate times come for desperate measures.
Hello All ~ I would never say anything about parents who medicate. Never, but remember it is my choice whether I do or don't. AND I AM A PARENT WHO WILL NOT TAKE THAT PATH. Yes, my son has his awful outburst and his horrible behavior issues but my family is always changing his atmosphere, his activities, and keeps him on a great routine. We are trying a new diet now. The difference between the majority of you friends is that I have the time to spend with my son minute by minute and that is rare because we all have to work and pay our bills. I have even taken employment at my sons school so I am not too far if needed. It works and my son's doctor sees some improvement in him. So, for the people who say that they just don't get it why parents don't medicate. I'm here to tell you that I choose not to. I chose to take other paths and I chose to have the right not to medicate. I LOVE my child with all my heart. Whether he is medicated or not, he will be successful in life. Good luck to everyone and please find heart that we are all in the same boat of understanding…
23rd may 2014
my son is nearly 18 years old. He got a diagnosis of autism (aspergers) when he was 12 years old. He has many entrenched, learnt behaviours. I work with children who have servere communicatrion needs/ autism and know many strategies to help my son regulatate himself but have still needed to turn to medication. Medication will be a bridge to help him learn new behaviours, hopefully giving him the skills he needs to self regulate –
currently he will punch, kick, bite, strangle me, There is no shame with medication and sometimes you have to weigh up the benefits. I know if we were to continue as we are , either his siblings, his dad, myself and possibly my son could end up with serious injuries -to me that means medication has to be beneficial. My son is bright enough to know he can't do this by himself! As a professional i know i could do no more, as a parent i feel i have let him down. I know we can't continue as we are, there are five people in our family – not one. My son knows he can't do this be himself and that he needs help. Hopefully the medication will give us a window to learn new behaviours, strategies. And if nothing else, give us time to reunite as a family again. My son is willing to accept help in the form of medication but is wary of the side effects. I hope this new chapter in our life can offer light but not make me lose the son i love and cherish.
I will update regularly to let you know of any pros and cons that we face.
I hope this will be of help to others, and you must remember that in those dark times you are not alone. Mishka
My 13 year old daughter: meds. Rispiridone and Prozac. It helps with sleep and her mood and aggression. My daughter is low functioning. She got very very aggressive when she hit puberty about 18 months ago. I ended up in the hospital twice with injuries. Controversy about drugs? I think people need to walk a mile in my (our) exact shoes before they express opinions.
Hi Autism Daddy.
You talk about a low dose of Klonopin, how low is the dose? There is a researcher called Dr Catterall suggesting that based on his research in mice, low lose Klonopin can reverse many of the problems caused by autism and even improve cognitive ability. He is talking about 10% of the "normal" dose. He has not researched it in humans, just mice. Perhaps your doctor is already doing this ?
What do you call a low dose ??
I dont medicate because medication will never allow me or him to understand the root of the behaviour to help or change it.There are no long term studies on children with ASD that discuss the effects of long term drug use of children with ASD. The problem in that is long term drug use for anyone without doubt cannot be beneficial or in the long term helpful.These children already have an altered reality and perspective of our world and drugs are going to enhance that.My sons life is his own and if he chose/indicated he wanted to medicate then thats his choice..but i do not feel i have the right to medicate another human being when the potential costs involved to his life havent yet been fully researched …and never to my son.
Yes my son has been what you call violent…yes hes hit out at others us..yes hes had sleep problems head banging etc. and we have had success without medication helping his behaviours to change.Behaviours are communication…good or bad…the task for a parent is to observe understand and find an alternative way to improve their lives…medication can never teach it will only conceal…the child learns nothing and neither does the parent….
Sonia, well said. I completely agree with everything you said as well as the fact that I do not judge either. I do not believe in medicating. I went to my son's doctor and 1 of the first things he said is LET's GET HIM ON MEDS…What the heck, I'm wanting to explore other options first…And I have had success without medicating my 8 year. There are still major problems but not as bad…Thank you again for your post 🙂
I think everyone is entitled to their own approach. I don't judge. I wonder if you'd change your mind, though, if your child got aggressive or violent? For me – it was either change the behavior somehow – or my daughter wasn't going to be able to stay home. It seemed like an easy choice.
As a mom and as an educator for students with Autism, thank you for thesr words!
I have a 4yr old non-verbal boy also. Although he is generally happy he has times where he gets violent and frustrated. I have not used any drugs yet with him and if I ever do I will be sure to find out about the meds first. I think the biggest thing here is not whether to medicate but what to give. I don't believe I'm giving stimulants but do think there are meds out there that will benefit our children
I felt really bad about putting my child on them…but they work. And…as someone told me…"If he had a medical condition such as epilepsy….would you do it" I immediately said yes…."He said ..there you go..its the same thing…your child NEEDS this medicine to function in the world" YEP…its as simple as that!
I work with children on the spectrum, from 'mild' to 'extreme' – medication works wonders for most of the children and makes a huge difference to their life's as well as everyone else around them. It's also noted that as they get older, depending innate individual of course, the strength of medication gets less as they 'learn' to recognise and control their outbursts themselves. I don't think there is anything wrong with medicating a person who is so obviously struggling to control themsleves. how many of us as adults medicate?
Thank you everyone for the opinions. My son's doctor wants to try klonopin and I was very confused about it. After reading everyone's opinion my questions have been answered and I think it is well worth trying. Maybe our story will be as successful as yours!
Hi everyone. First I want to thank Autism Daddy for creating this page. Although I do not have an autistic child of my own, I work in a classroom with 10 who are autistic and can honestly relate to all of the comments posted above. Working with these wonderful gifted autistic children have truly opened my eyes to a whole new world. Much like everyone else, I thought NO way med's are an awful idea for these kids, it’ll turn them into zombies. After observing my new classroom, it was clear to me the difference between the child being medicated and the ones who are not. They are much stabilized, happy, and easier to work with, more social, more independent, caring with others and especially with themselves. Frankly, it pisses me off to see the unmediated students. I think to myself, if only they’re parents can agree to medicate, this child would be very successful at school and home because the children are FULL of positional. The little they can manage to do, they excel and they feel so proud of themselves. Those are the moments I live to see because as an educator, I yarn to see those happy faces filled with joys of achievements. Parents who refuse to medicate their child should really reconsider.
I am actually a phych student and one of our assignments is to find a topic we are passionate about and write a paper defending it. Right away I knew I wanted to stand up for autism and medication use. But finding people who would agree or feel the same way I do, deemed harder than I thought. So I am glad I discovered this blog and intend on referring back to it while writing my paper. Thanks to All.
In addition to medication, therapy can be extremely effective. But, recently my employer (Walmart) has refused to pay for my child's ABA therapy (which is provided to me through Walmart's contracts). Walmart tried to tell me that I was in the wrong, but they didn't have a case. Its disgusting that someone would try to back out of payments for a sick child who needs help.
You can read more about my experience here: http://www.vamedmal.com/blog/walmart-s-war-on-health-care-for-autism—what-in-the-world-is-this-company-thinking-about.cfm
My son had to go on meds because yes we love him for who he is but society would not allow him to hit,spit,kick or touch them. He was not reaching any iep goals because staff refuse to touch him. The older he got the harder it was even family refuse to invite us over because of his behavior so Yes I had to get meds or get beat up while others turn their back on us. Like I read your child your problem deal with it and stop thinking society owe you and your child anything but respect.
I am the mom of a 4 year old boy(literally the size of a nine year old.. that's the size clothes he wears!!) with autism, nonverbal, and mom of a 3 year old typical girl (size of a seven year old.. what can I say.. we are tall parents:P). Our family recently moved from the states to the UK and have yet to enroll my son in anything here but he had ABA, Preschool, OT, Physical Therapy and speech therapy along with some experimental therapies in the US.
[Can I just say as a rather long footnote here (sorry need to get it out) that while some of these therapies helped with some things, the main reasons for the therapies seemed to be overlooked. ABA for example taught him to use people as his tools, rather than how to effectively communicate. He will yank your arm around the house to show you what he wants though its usually not clear. He will put your hand on his cup, for example, then force your hand to put it down then to reach up then pull you into his room and start screaming frustrated you don't understand. Speech therapy, tried to teach him signs.. Am I wrong or don't you need him to look at your hands in order for signing to be the least bit helpful? Don't you need some basis or record of him attempting to copy something, anything in his lifetime to even begin to consider signing as a possible ability he will learn through demonstration? It just didn't work. sorry but not for my son. The helpful stuff? He had less energy so he might take an hour nap everyday and then still stay up till 2am. Just over 2 years of all of this and we still have little to no agreeable means for communication, no way for him to tell me something that doesn't cause some kind of physical pain (ie. yanking, throwing, hitting ect.) and as the main receiver of it all can I just say I am Tired so tired.]
Now the communication and it all aside, he seems all around angry most of the time, my daughter is scared.. terrified of him, and I must say even I flinch when he initially enters a room or when he gets to fussing and what not. He has given me somewhere around 20 black eyes by the age of four!! My husband is against meds and I just don't know b/c at this point I am desperate. I suppose it's not as easy as whether or not to medicate for us b/c we have to get him re-evaluated and put into the UK system before we can even consider it as a viable option. Any advice for what we can try over the counter in the UK? Or maybe some therapy that could lessen his communication frustration? Any help is hugely appreciated.
My husband was against meds with a passion. My daughter was like this. The day she tried to slit her own wrist she was in kindergarten. We put her on meds and it has been uphill ever since.
Hi. New to your blog. Our son was diagnosed with severe autism at 2.5 years and we started an intensive ABA program and he made amazing progress. Not "cured" but certainly great progress. However, when he was 15 started acting not like himself. Talked about running away, started hitting himself, etc. Behaviour we had never seen before. Went to pediatrician to rule out medical causes. Behaviour escalated and we knew that just behaviour mod was not going to do it this time. Put him on Prozac and we've seen a huge improvement. Also is taking Melatonin at bedtime to help get some sleep. I was in the anti-meds camp until this happened to us. More open-minded now.
I am considering medication for my son. I just want him to be happy. He seems like he wants to crawl out of his own skin is the best way to put it. I totally respect and understand how you feel. I would love to be able to say we had a great 12 months with our son. I always enjoy your posts keep em coming. Robin
My son has been on medication since age 7. At that time he was: pulling children's hair, very overactive, i would say also that he was a very alert and aware child but definitely more active. Also, with speech and communication that still is more repetitive and mostly what is called "non functional". The point, the school(private,state approved) were very clear in their actions, that I needed to do something about his behaviors. No initial FBA at the time. My son began with Risperdal. I had no issues or have no issues with medication but I have felt that some schools do likely prefer for the child to be medicated. It is certainly less of interventions for them and the staff especially the assistant aides can have all different levels of training and insight when working with children in the Autism spectrum, especially the "low functioning" non or limited verbal. Definitely, my son's personality changed mostly specifically in that I did not see that original, true essense of vibrancy in him anymore. He continues on Medication Risperdone and a recent one addressing his focus. It is always trial and error kind of. He is being on others along side with Risperdone which has been constant and I believe working better for him. School complaints will always continue. Now in another school, same issues in terms of staff skills and accountability in working with children that manifest behaviors related to their disability? Behaviors which they should not be surprised or not expected. It is always easy to blame the child in a blatan or subtle way. My son in his puberty now, improvement has been made with some behaviors,(sad to say but medication in itself created some) but others emerge or re-emerge. I am the best advocate, in terms of making sure he is not overmedicated to the point of sleep. The best has been in keeping my proactivity in communicating with the school staff, even when a few of them may discourage it. It is always a very thin and delicate balance in communicating and advocating for your child when he/she can not do it for themselves in any way and when you have to keep yoursel "in line" and try not "bother"(Ireally wanted to use another word)staff in school. (Yea. I know he has rights/I have rights, right?) I am afraid, I should not say more. I felt compelled to share this. Thanks, for your post, i recently discoverd them. I totally see some of your experiences with your son and my experiences with my son. Thanks!
Two of my boys are on medication. One is high functioning and the other is moderately functioning (you know, that limbo between high functioning and low functioning)…and I have to say, the medication helps. The only times really negative behaviors erupt is when there is a severe trigger that stimulates their fight or flight response…and that is always a sign that something is going on. There is no right or wrong, we have to treat our children in such a way to provide them a better quality of life. There is no need for them to suffer.
I myself am completely against meds for myself! Unless I'm dying I don't take anything. My grandmother/best friend died because of taking meds to make her better and I'm just against it for me. My son and husband are a different story. (my husband is bi-polar manic depressive)We were at the neurologist office yesterday for our son, she wanted to put him on a blood pressure med that would help him sleep (I can't remember the name). I told her I prefer not to use it unless it's absolutely necessary. We use 'knock out juice' (melationin) already and it works just fine right now and I will up the dose if needed and then if it doesn't work, then I'm up for what will so that he gets what he needs, but until it's broken don't fix it right?!!!
I agree with you 100%, thank you for sharing this post…
I agree with your article 100%. Tried it the other way, and it did not work. My daughter has weekly therapy, as well as being on 3 different medications for her multiple disorders. Why are people who are against meds. so vocal about it? I don't go around preaching that you MUST medicate your child, so why do a lot of people feel the need to preach the opposite??
Haircuts…..now that would make for an interesting post!
my oldest is very verbal and always has been but he was very aggressive and distractable so We tried meds. In conjuction with behavior interventionists working with him he has gotten so much better. For those with kids with behavior issues my son also used to attack girls and try to attack babies/little kids. I finally figured out that it was the more shrill voices of the girls and the babies crying that was setting off his sensory issues. I redirected him alot and told him to ignore babies and girl since as he put it he didnt like them.
Autistic Children usually undergo a combination of organized education & instructions, speech, occupational and behavior modification therapy. Each method differs for every child and is intensive ( 30-40 hours each week until the child is a teenager ). However, numerous of these children will never be able to turn into self-sufficient beings in their adult lives and simply will live in professional home care centers.
And your point is? Also what would your expertise be? There is still value in EVERY person.
My son is high functioning and verbal, Aspergers. We still elected to trial medications after three years pressure from his anti-meds school. Why? Despite being high functioning and verbal he was launching furniture. He was bashing himself into things. He has no sense of pain and was damaging himself and others. He was hitting, kicking, biting, lashing out, screaming. CONSTANTLY. He was miserable, angry, violent kid and a shadow of the happy toddler he used to be. I looked like a domestic violence victim up and down my arms from trying to hold/help him. He was spending maybe 10-15 minutes a day in the class before having to be physically removed to prevent him harming himself or others. He was two years behind in work with an IQ of 132 due purely to being in a state of constant meltdown. He constantly had people in our community glaring at him and telling him he was naughty/awful/wicked/needed a good smack. A cashier raised the diving bar that goes between orders and told him she was going to give him a good smack for stimming. (Giggling/looking at lights.)
If people dealing with children who are non-verbal want to know how it feels from a verbal child… here it is from one verbal child: at age 7 I gave him a ribbon we'd won at a show he'd helped with. He held it for a moment, proud as punch before shoving it back at me and bursting out hysterically crying. Everything that had been bottled up came out. He told me his life was a write off. He was stupid and crazy and it didn't matter if he wasn't in class because everyone knew stupid crazy people are wastes who never do anything. He felt he was just a bad person who shouldn't be around and wrecked everyone's life around him. He felt his life should just go away and never be born. He didn't want to be in his own head. This is what his school wanted for him to continue with so they could hold to the holy grail of 'no meds'. No child should have to feel like that for the sake of someone else's personal beliefs.
We attempted to reason with the school. Finally we told the school we'd been trialing meds for the past month. They knew. He'd not had to leave class or had a meltdown in the entire time. No side effects. Just a blessed relief from his violence and outbursts for everyone. His teacher battled for us, his principal refused to budge on her anti-meds stance and told us we were being kicked out due to their policy against having medicated kids on campus. We flicked them the bird as we left.
When we went to the review with the paed to decide if the medication was working for him or not he broke down crying and begged the paed not to take away the meds. He didn't want to go back to his head feeling so messy and running out of his hands. His words. He'd had the meds fully explained to him – we went over how the receptors in his brain worked, how everyone has slightly different ones/locations/densities. We explained how the medications can sometimes work differently with this, possible side effects, the possibility that some might help and some might hinder, the possibility at some point it may become ineffective. He told me he wanted it because anything was better than this.
Now granted every kid is different, verbal or non verbal. Maybe your kids would speak different if they could. But this is one kid at least. It may not be for everyone – I'm also Aspy, high-functioning. I need anxiety meds and that's about it. The rest I can cope with. But for some it really IS the best choice.
Your details sound so similar to what has been happening with my daughter. Medication has changed her life to make her happier than she has ever been. Those that have never medicated have no idea whether this will help or not so their argument that they know what is best is based on delusion of gradeur. The saddest part is that some think that their child is happy. Aspergers children know they are different and when it is realized how much damage (physically and mentally) while in the uncontrollable fight or flight episode, they feel horrible. It causes increased anxiety and depression.
I've really been thinking about meds lately. Right now, my son is functioning pretty well at school, but next year is the big first grade. Things that are looked upon more kindly in a kindergarten class may not fly.
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.
My son stabbed me in the same spot with a fork a few months ago…I also started him on meds shortly after.
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
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.
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?
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.
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.
Try Marijuana.(edible kind) Same results, Less side effects.=)
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!
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
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 🙂
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!
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?