It has been suggested I write a post about medications, both those prescribed and given to Autistic children, as well as those taken by Autistic adults. This is not a topic I have any first hand knowledge about. We have not given our daughter any medication, other than melatonin at night to aid in sleep, which has been nothing short of miraculous, and during those unfortunate years when I thought or hoped massive amounts of homeopathic tinctures would “help” her (they didn’t) and later the dozen or so vitamins recommended by the naturopath, we have managed to steer clear of medications. (By the way, magnesium is helpful with constipation.) I also have to quickly add, we have been able to steer clear of meds because our daughter does not exhibit any clear need for the medications currently available.
Personally I don’t like taking even aspirin, forget anything more hardcore, but I also am coming from a privileged vantage point. I don’t have debilitating depression or anxiety or other issues, which would make taking medication a good idea. The one time in my life when I was depressed and bulimic, Prozac was prescribed. My reaction to it was less than ideal. Even taking something as benign as ambien has a negative effect after more than one night on it. I seem to be extremely sensitive to drugs and often have an atypical response to them. With ambien, if I take more than half the prescribed dose I become so depressed I can barely function. As a result I avoid taking anything, even if prescribed.
But I know people who do and have taken medications of all kinds and to say that it is optional, is being overly simplistic. For people who need medication, things like antidepressants, or meds for anxiety or other issues that affect their ability to function optimally, it is profound the difference the right medication can make to their quality of life, their ability to wake up in the morning, their productivity level etc. For those people, medication makes the difference between a bare, brutal existence and being a vibrant, active being who is fully in this world and able to enjoy it. But what about those who are Autistic? What is their experience? Is it similar to those who are non autistic? Is it the difference between barely scraping by and being able be fully present, or is it something else?
So I am asking for your help. Anyone who has any first hand knowledge, whether it is you taking the medication, giving it to your child, or if you were given medication as a child, can you tell me what you take/took/were given/ or give to another and how it affected you? Was it a positive experience, and if it was or wasn’t, exactly why? Do you respond to medication atypically? Did you have to experiment? If you are a parent, describe your decision to medicate, what was the outcome, did you feel it helped or didn’t help? Did your child notice the difference? Any and all answers will be quoted anonymously unless you tell me otherwise or if you leave your comments below, I will only use whatever name you used to comment with unless you tell me otherwise. If you prefer to email me, please do: emmashopeblog@gmail.com.
Thanks so much everyone. Really appreciate the willingness to share your experiences with me.
Emma's Hope Book 
I agree with your decision not to medicate Emma why would you give her medication if there’s nothing wrong with her.
My son has co-ADHD-autism diagnosis and takes Ritalin. Its effect is quite remarkable – he basically cannot sit still and concentrate without it. With it he is capable of learning at a quite high level. Apart from constipation, which we manage with a fiber drink, he tolerates it very well. It’s a godsend. Then again, I am a pharmacist and my husband’s a doctor so we’re comfortable in the world of medication.
i’m an adult with asperger’s…most of my difficulties have been focused on social mechanics; after many years of serious social delays, i became anxious around people and began to experience severe depression. at the age of 30 I finally visited a psychiatrist and began a 2 year period of trying different medications. at first, the meds were aimed at helping both anxiety, then depression, later we switched to just trying meds for depression.
i tried most of the major meds for this: zoloft, effexor, wellbutrin, one or two others that i can’t remember. unfortunately, we never found a med that made any difference. side effects were often minimal…with wellbutrin, i could feel a little buzzed, like a strong coffee buzz, but that was about it. so, they didn’t help, but there were never any downsides to trying them.
what i understand is that people are less responsive to meds if the depression has been intense, and long term, so that may have been a factor. i was told repeatedly to try meds, but to take them in conjunction with therapy, and it was the therapy that ultimately made a difference.
i personally did not benefit from the meds, but i think i would recommend trying them, for people who are struggling. you hear a lot of horror stories. in my experience, there was no downside to trying them. and the psychiatrist was always honest, forthcoming about what i was taking and what the expected outcomes were. she ended up being the one who said, “i’m not seeing a reason to try another new med, let’s discontinue for now so that you can focus on therapy”…so she wasn’t trying to mindlessly push meds, she ended up being the one who advised i stop taking them. anyway, point being: nothing worked, but it was an overall positive experience (in the sense that meds were taken in a careful, thought-out way). sorry for writing a book here!
Oh noooooo. I wrote an entire list and then I hit backspace to correct a mistake but instead it made my browser go back a page and NOW IT’S ALL GONE. Grmbl.
First of all, I would like to say that if your child is able to articulate their wishes on the subject (like “I feel better with that pill”), then by all means go for it. Try out different things. It’s what adults do as well. They can make a choice about what makes them feel better and what makes them feel worse. if your child gets a prescription for something you yourself would be hesitant to take if you are feeling or acting in the same way as your child, then don’t take it, or make the physician explain why they want to try out this particular type of medication. For example, this is why I have refused to consider Risperdal, because I don’t think it fits my problems and because the psychiatrist has failed pretty badly in explaining why she thinks it’s applicable to my situation. So, not going to happen.
If your child doesn’t have the tools to communicate, except behaviourally (violent outbursts, extreme stimming, self-harm), then I would like to ask you to be extremely careful with medication. Yes, it make them calmer, but that might also be because they don’t feel anything anymore. No happiness. No joy. No love. As an adult, would you take medication like that because it enables you to be a productive employee (drawing a parallel with school here) or makes living with you easier for others? So I would like to suggest that teaching your child to communicate in a way that works for them, not just by focusing on speech, should come *before* any medication. I know it’s hard. But picture boards or colouring pencils or repeating phrases from TV or anything that lets your child express a mood in their own language will help in determining whether a drug is helping them or harming them.
So. That was the official activisty bit. I’ll write up a list of things I’ve taken in the next comment. (Words words words, I never shut up). 🙂
Maybe I am reading this wrong, but what I took from your post is that, because my son doesn’t have a good way to consistently express himself, I should hesitate to help with with medication. But if he could reliably converse with me (in whatever way he could) then I should be more open to helping him through medication. It seems like you are saying that the kids who have the skill of expressive communication get the privilege of getting the help that medication could offer, while those who don’t do not get this help.
Also, I have seen a LOT of kids that cannot learn an effective way to communicate WITHOUT medication to either help them keep calm and focused enough to learn. So, because they can’t communicate, they can’t get the medication, but without the medication, they can’t learn to communicate. Again, maybe I am misunderstanding…..
I know, it’s really difficult. I’m not advocating for making people suffer, but it’s just so difficult to tell what is helping and what is actually harmful, when it comes to antidepressants and other psychoactive drugs. Behaviour can be a measure of success but it can also a measure of… well, giving up the fight, really. Knowing that if you melt down or lose control, you’ll just get extra pills to make you behave normally. That’s why I added that thing about “what would you personally consent to take if you were in their shoes?” But I know that parents usually don’t just put their child on medication unless they feel it’s the only option.
Oh. Also. I’ve written about this subject myself. [shameless self promotion] http://autisticook.wordpress.com/2013/08/11/americas-medicated-kids/ [/shameless self promotion]. And yeah, the above comment is very much influenced by the new insights I’ve gained thanks to Outrunning The Storm. I can be wrong sometimes. 😉
It’s a very personal decision. Sometimes your child gets to a point where nothing else is working. And when they are running away and self-harming and staying awake for a days at a time you have to research how to change that. In our case meds were the only thing that kept our child alive. I truly believe that he’d be dead right now if he weren’t medicated. Of course, Our child has underlying medical conditions (including bipolar disorder and he rapid cycles) that make the medication absolutely necessary.
That said, it was a learning experience. We nearly gave up several times. We had to go from doctor to doctor. We finally found an awesome neuro and psych who finally diagnosed our child correctly after many failed attempts and disastrous trials with medication. But we feel like we have it right now. It wasn’t easy. It isn’t right for every child. But for our child it is a difference of night and day. He can sit and eat now. He didn’t eat before. He sleeps. He is happy and plays and functions and hugs and kisses and wants to be with us. He didn’t before. We do worry about long-term side effects but if it means taking him off of his medication and he begins climbing on third story roofs again or getting in strangers cars or spending the whole night laughing hysterically and then sobbing and then biting himself, I chose the medication.
I avoid taking anything if I can help it. I don’t like the way they make me feel. But even I got to a point where I had a serious medical-related psych problem that wasn’t going to go away. I still hate meds. I still hate giving them to my children. But I look at it this way: if they had diabetes or cancer or another serious medical condition, would I avoid meds? Or use them as another tool to help my child thrive?
I don’t pay attention to the guilt any more over giving them meds. I look at it as the best thing I ever did for them. I’m not going to beat myself up anymore and I’m not going to allow others to make me feel guilty or make me feel like I’m a crappy parent because I couldn’t control my kids’ behavior.
Just my two cents. Sorry it’s a tome. 🙂
Our experience with my daughter is that when she has taken medications the negative side effects outweigh the benefits. The one exception was when we stumbled onto a correlation of her temporarily taking a particular antibiotic which immediately halted her seizures. That was very informative and helpful for figuring out how to nutritionally change her gut ecology to stop her seizures long term.
we medicate our daughter… I am not sure ( and neither are the so caslled “experts” )whether what is happening is co-morbid anxiety issues OR if the anxieties are symptomatic of her experiencing the world differently from the majority but being expected to follow majority rules of behavior… either way, she needs help. Without her meds her sensory issues are pronounced enough that she can not tolerate the feel of water on her skin – not only missing out on things like swimming but where EVERY bath or shower was a pitched battle, wehre brushing her teeth was “burning” my mouth regardless of type ( or even if ANY ) toothpaste was used. With her meds she can bathe, brush teeth and even swim. She can tolerate wearing socks and underpants.
She is able to attend a mainstreamed classroom in a school with small class sizes and navigate not only the social lode in the room, but the hallways, the lunchroom and recess. When she is off her meds she is overwhelmed, the “chaos” of all those bodies leaves her feeling paniced and she either retreats and shuts down or melts down.
With her meds she is able to regulate enough to be able to RECOGNIZE when she isn’t able to tolerate more stimulationa nd is beginning to self advocate. Without them she is so overwhelmed that she doesn’t know where to begin to tell us what is wrong.
But it has been trial and error – finding the med that works ( as opposed to the ones that leave her angry and short-fused, or so fatigued all she can do is fight to stay awake… ) has not been fast or easy, and getting the right dose, particualrly as she grown and puberty – hormones affect everything is an ongoing struggle.
Like Ariane, I tend to have an atypical reaction to medication.
I hardly ever take painkillers, partly because I have a slightly higher pain threshold, but also because the attitude “if you don’t need it, don’t take it” was drilled into me by my parents. Ibuprofen makes me zone out, and in higher dosages (500-600mg) I become completely unresponsive. So I only take paracetamol (last time I took one was when I had a root canal infection a few years ago). Opiates are fun! But far too effective.
I have started taking B12 supplements on the advice of my autism coach, because she said a lot of autistic women have B12 deficiencies. I haven’t noticed a difference yet. I’m probably anaemic like my grandmother and I have a chronically low blood pressure. I don’t have any medication or supplements for either of those. The problems with low blood pressure have gotten worse since I stopped smoking and taking oral contraceptives.
I quit smoking by taking Champix (Chantix in the US). After I packed in smoking completely, I also stopped using Champix. That’s when the real problems started. I usually call it “becoming more autistic” because people tended to dismiss the problems as “normal for quitting”. These included constant shortness of breath and heart palpitations (generalised anxiety I think, but it didn’t feel anxious, only like I was constantly running), panic attacks in social situations, a much higher than usual sensory sensitivity, very short attention span, and a complete inability to look people in the eye (didn’t have many problems with that before).
I was prescribed Oxazepam for these symptoms, which helped a little bit with the panic attacks, but nothing else. It also made me dependent within 3 days, resulting in insomnia (and I mean not sleeping AT ALL) if I didn’t take a pill.
So I quit taking them altogether and started back on the Champix. This helped immediately. I’m fairly sure this is because of the dopamine mimicking effect of Champix, and my psychiatrist has tentatively agreed. However, she doesn’t want to give me a prescription for a dopamine reuptake inhibitor (DRI) like Wellbutrin until my ASD diagnosis is final. So I’m still limping along on half a dose of Champix a day which is going to run out in a week and a half (damn damn damn damn). I’m open to other suggestions from my psychiatrist but not if they don’t take my experimentation with Champix into account.
(Which is basically why I’m so opposed to Risperdal and/or Zyprexa as a treatment for myself. If dopamine withdrawal causes my symptoms to increase and make me feel like crap, then don’t prescribe a dopamine antagonist just because it’s helped some other autistics OK THNX).
I hope I am not opening a can of worms here, but has your autism coach every suggested taking the active form of B12? A lot of autistics can’t convert the inactive form of B12 to the active form of B12, which is what the body actually uses. It is possible that your body is just purging the B12 because it can’t convert it to something it can use. Just a thought.
That’s interesting! Thanks for suggesting it, I’ll look into it!
I gave up smoking with champix (only used the 2 week starter kit), but never correlated that with my autistic “symptoms” getting worse. That explains a lot – I wonder if the nicotine helped as I’ve smoked since I was 12?
With regards to other medication I have tried a varied lot. Opiates help quell the multiple threads and help me concentrate but only very short term. Psychadelics have helped me a lot, but I wouldn’t outright recommend them for everyone, for obvious reasons. Barbiturates send me straight to sleep and stimulants affect me far too much (I can only drink a cup of coffee per day)
It might be worth looking into. I took up smoking again while waiting for my diagnosis, which I now finally have (WHEEEE! SO HAPPY), so I have an appointment this Thursday to look at possible DRIs. I’ll give an update on that once I know more, although it might be very specific to my own situation. I probably don’t need to tell you that everyone responds differently to meds. 😉
The increase in sensory dysfunction (which I believe the eye contact is a part of, TOO MUCH INFORMATION in the eye region to be able to process it all) when I gave up smoking is very noteworthy in my opinion, though.
Thanks, Ariane! I suggested this post, as I thought it might be helpful. No med is completely benign, and should never be taken without a true need, and should be avoided whenever possible, especially with children. I hate taking meds, and it took me a long time to bend my stubborn will enough to admit I was better off understanding and using certain meds.
I am a strong believer that a healthy lifestyle is best for anyone: Good diet, good sleep, hard work, pleasures, and spirital balance. I react strangely to many meds, but constant personal research has armed me with a knowledge of what I can use to my advantage, with little or no side affects.
Gabapentin: an anticonvulsant, in a low does, is not metabolized by the liver, and has few side effects. It miraculously eliminated tiny seizures, and constant pain from the texture of clothing, harmful sensory challenges like flashing lights and loud noises. A life long headache, so constant I didn’t even know I had it, dissappeared, and I finally slept and functioned much better. Why shouldn’t I take that!
The other issue is shutdown, which has certainly kept me from reaching my full potential. It was always the most debilitating thing to need days of quiet alone time after each day of using too many “spoons”. Because I perform, my hours are strange, with long hours and late nights. Swing shift syndrome is a given for any musician. Modafinil is a non-amphedamine awake aid taken by leaders around the world, fighter pilots, and others who must function for long hours at full capacity. It is only approved for Narcolepsy and Swing Shift Syndrome, but many autistic people and their caregivers have strange sleep cycles, at least at times, that might be considered swing shift. The added benefit is it works on the Gaba receptors, keeping you focused. It is nearly impossible to procrastinate on this med. I may at times adore slipping into my dream world, but cannot always afford it, so this non addictive med keeps me functioning and on track, and I can take it only when I need it.
I have not seen where either of this meds are commonly used by autistic people, so I thought maybe others may find this info of use.
My decision to medicate my autistic son was borne out of necessity. He developed severe anxiety and agoraphobia which in turn worsened his ASD to such an extent that he was barely communicative and locked in his own world. It was quite clear to all (including professionals) that he was poorly and that emotional/social support was not enough to help him feel better. We therefore sought psychiatric help and accepted a course of Prozac; a difficult decision because over here in the UK there is a lot of negativity (and stigma) about parents medicating their children for disorders such as ADHD and autism. Nevertheless, after a few weeks the medication started to work and my son’s anxiety started to lessen which enabled us to start working with him and encouraging him out of the house. This wasn’t a quick fix however; it took many months of gentle encouragement and repeated exposure to things in order to help my son overcome his agoraphobia but without Prozac I doubt we would have ever achieved that. I do worry about the long term effects of him using this medication (currently no obvious side affects) but his anxiety disorder can be so disabling I don’t feel we have much choice. In the end of the day I want my son to be well and if he requires medication then so be it. I’m not going to be harsh on myself; I’m doing the best I can with what is available.
Also, here’s a weird one: I did a show for a prominant neurologist many years ago. I had just returned from London, where we had performed for royal wedding, and I was so harmed by it that we thought the band would never be able to travel again. I chatted with him about it and he suggested I try a little tequila, because it does not work like other achoholic drinks. It had a mild anesthetic effect, and a little can numb when there is too much incoming sensory attack. I don’t tolerate alchohol well, but this was useful when I was younger. He also recomended Inderal, a beta blocker useful for public speakers and used by many musicians who are nervous performing publicly. I have no stage fright, but the adrenal surge can be bad, and I found this helpful for a while, but make me feel rather flat, with no joy. It did, however completely eliminate the need to pound my head. So, there ya go! XO!
As others mention, I tend to have atypical reactions to meds. Stimulants calm me down, and I actually do find ADHD stimulants helpful for focus. Depressants either knock me out completely or make me hyper (Benadryl knocks me out for 7-8 hours – like, I can’t wake up, I’m so heavily sedated knocked out. By contrast, alcohol will see me bouncing around the room). Opiates make me seem extremely drunk, even at low doses, but they don’t affect my pain perception at all, so I don’t use them. They drug me up, but they don’t relieve my pain. Ibuprofen is more useful to me for pain relief than morphine – my Tylenol 3s, when my wisdom teeth were removed, were returned to the pharmacy with only one used, after it knocked me out for 6 hours and then I was slurring my words and unable to think for another 4 and I couldn’t express that I was still in pain.
I’m minded to consider medicating across the spectrum of views we have on medicating; so its something to be considered across the totality of our collective life and its arrangements.
I then position as anti-medication and anti-psychiatry; because of how I see collective human life playing out. I would need much persuasion that an instance of medicating an autistic child was necessary, because there were no other approaches to support and remediation, because the child would benefit going forward over a life-time.
I’m then aware of, and am respectful of the rest of a spectrum of views on medicating, and medicating autistic children specifically.
So, pragmatically and practically, I would see medicating as permissible, if and when the most rigorous of discussion had been had about doing that, and about alternatives to doing that.
I do think that we medicate way too freely, and on too great a scale. I do not think that the argument for the benefits of medicating has been yet carried.
Medicating autistic children often seems to produce effects which make it less possible to apply alternative approaches; this most applying, in my view, to what I would terms the exercise of autistic intelligence.
Very often, in practice, an autistic child exercising their autistic intelligence, will seem non-compliant and badly-behaving from the point of contextual others. What plays out from that complex nexus, can engender things in the child (anxiety, hyper-activation, PTSD) which some will be tempted to throw medication at. There is an aspect of the chemical-cosh in some medicating of some autistic children.
In none of this do I intend to oppose or offend others whose views differ from my own on this subject.
My son has both autism and OCD. When he was five he was having more frequent bouts of aggression, and his father and I came to the difficult decision to try medication (Risperdal). It took a trial-and-error of eight months to slowly come to the right dose, but it has made such a difference in his quality of life, and by extension, his family’s. We are fortunate in that he’s had very few side effects. We still use behavioral interventions as well, and these strategies, coupled with the medication, have worked very well for us.
Here’s my two cents, as a mom of an autistic kiddo and a NT kiddo. Since you can’t actually medicate autism, just the co-morbids that can come along with autism, my rule of thumb is: what would I do if this was my NT daughter? I try to pull autism out of the picture. (As of right now, my son is on no medications for attention, aggression, or anything like that. He is on a few medications for some gut issues that we are trying to straighten out.) If my daughter was having difficulty focusing, I would try a few non medical things, and if those didn’t work, I would try to find a medication that would allow her to focus. I would do the same for my son. If my daughter started exhibiting aggressive tenancies, I would try to find the root of the problem and deal with it, but if medication was necessary, then I would medicate. Again, I would do the same for my son.
I decided to try a very low dose SSRI with my daughter (who lost her speech @ 2y/o) when she was around 7 and experiencing such anxiety that I felt it was debilitating. I had read Temple Grandin’s book in which she said anti-anxiety medicines had significantly helped her, and I had also read that some autistic children regained their speech after trying a course of low-dose SSRI and so, of course, I had hopes that my daughter might experience this, as well. Our difficulty was in convincing the Psychiatrist to prescribe a low enough dose; I insisted on a dose of 2.5 mg which he scoffed was too low to be of benefit. He wanted to start at 10mg. Long story short, my daughter took 2.5 mg Prozac for years and benefitted enormously in her ability to tolerate and cope with the outside world without side effects. Higher doses, when tried, were problematic. She’s now 20, and over the years we’ve only increased her dose to 5m.g. Without it, she unravels. Though she has yet to develop the ability to speak, my daughter learned to type to communicate and so has been able to make her own decisions regarding her diet, supplements, meds, etc. which, of course, makes a huge difference in the quality of her life!
Wow. I am impressed with all of the intelligent commentary that your readers have provided. I was going to say much of what has already been said, but was not sure I should, given that I am not the autistic, but one of my (now adult) children is, and that perhaps it should come from that person. Needless to say, it’s a tough decision when you are a parent of a young child, and all of the medical community around you is saying medicate. We tried it, and it did not work for what the medicine was supposed to work. Tried four different meds. No effect. ON a side note, a non-autistic, yet ADHD child (not the first child mentioned) DID benefit from meds, and still does as an adult.
My son has been medicated since he was four years old (he is almost ten now). Without his medication, Jaymes is physically incapable of standing still. His body shakes with tremors, his fingers twist wildly, his knees knock together. He can’t hold a spoon to eat, or a cup to drink. He can’t eat dinner, because he cannot control his arm movements. He has trouble chewing, because of mouth movements- he can’t control those either. He can’t play or watch TV, because he has to obsessively walk the perimeter of the room he is in, he can’t do any school work because he has to move various parts of his body compulsively. With meds, Jaymes suffers. He can’t live a tolerable life. He’s angry, frustrated, and depressed. Severely anxious. He can’t even do the basic things we all take for granted- sleeping, eating, playing, talking.
When Jaymes started meds, we has to try everything under the sun before we found a combination that worked. It took a couple of years to get it right. Then he grew, and his brain chemicals changed- and we had to do the whole trial and error thing again. Once things were stable, and the right doses figured out, Jaymes was a different child. He could eat a meal, he could watch TV, he could play with us. He could actually start learning at school. His frustration and anxiety melted away. He stopped hurting himself and others. He slept at night.
Meds aren’t the devil, like so many parents think. Jaymes isn’t a zombie- he is still himself- but functional too. He’s not sedated out the wazoo, we don’t drug him so we have peace a quiet. He had no quality of life before the meds. He was miserable, and angry. Meds brought Jaymes some semblance of control over his body, his mind, and his life.
Unfortunately, Jaymes has once again had a growth spurt, and the meds aren’t keeping up with the changes in his brain and body. We can’t raise the meds we know work, because he is too small. So we’re stuck trying different meds. Currently Jaymes is on Risperdal, Trazodone, Intuniv, and Strattera. The Strattera doesn’t seem to be helping- if anything, it’s causing him to be more self injurious and more prone to meltdowns. But we have to try.
I’m also on meds. As much as I love my Jaymes, being his mom hasn’t been easy. I cannot control my anxiety and depression issues without medication- the change once I began medication was like night and day. For awhile, I was so depressed I could not be a mom to Jaymes, and he spent six months in temporary therapeutic foster care (with regular visits with us, of course), so that I could sort myself out. If I had not done that, I could not have been a real mom to my son.
Meds are not a perfect solution. They’re all different, some don’t work, some make symptoms work. But sometimes they are the difference between happiness and suffering- and in my case, the difference between life and death,
Someone pointed out that meds are not the devil but they can be if all parties are not keeping a close eye out. I have been in both positions. For the most part I have had little success with meds. Usually winding up with a pardoxical reaction, no reaction or bad side effects. We did have a brief tie when I was in university where a microdose of Luvox worked very well for social anxiety. I had gotten to the point where I had trouble going to school because of the chaos between classes It only worked in a microdose of Luvox was really effective and made going to university possible where as previously trying had reduced me to a non-verbal mess who would need to flee every day. I took it for a year or so and then stopped without a return to the previous symptoms. Later a doctor was tempted to use it in much larger doses for depression where it didn’t work and has never worked again for anxiety.
In my life I have had so many medications tried on me. Even though I can speak most of the time and am an adult it is easy for doctors to get the power to make those decisions for you. Even when you retain it the pressure to accept medication or have an unfortunate consequence (less services, no help with housing, and so on) happen.
There is no one right answer for meds. I think the reason people worry about some children being drugged too excess is that some really are. Others have the meds that make a difference in their life in a responsible way.
My sister-in-law was against medication. My nephew suffered from a learning disorder that was so atypical no label could just be produced to say ahaha this is what we should do. She struggled for years over whether he should have meds or not but it was a very simple issue in some ways. With them he could learn and without he seemed to actually be losing ground. He’s in university now. It wasn’t so simple seeming at the time though and there were consequences to any decision.
I don’t envy people who have to decide for others. Might be one of the few up sides to not having kids of my own I guess.
I think this is why I’m defaulting to “no, unless”. Because the pressure for autistic people, as well as other neurodivergent persons, is so high to accept the medication when it’s offered. If you don’t, you’re either told you’re too autistic/depressed/anxious/delusional to know what’s good for you, or you’re labeled as uncooperative, sometimes with very far-reaching consequences like loss of support, housing, or even income. It’s not always a simple question of “does this make me feel better?”
First of all I want to thank you so much for having this conversation. I see so much good coming from this.
I am not opposed to medication where it is absolutely necessary, but I do feel it should be approached with great caution and should be part of a holistic approach (therapy, good nutrition, OT/PT, etc.) My own experience was quite negative. When I was about 11, I was unable to cope with the changes of adolescence and developed severe depression. Over the next two years I was put on various anti-depressants: Prozac, Paxil, Wellbutrin, Lithium, Zoloft, and probably a few others. I had so many side effects-tremors, RLS, dry mouth, palpitations-that I was given medications for those on top of what I was already taking. At one point I was probably averaging two or three pills a day. The Zoloft gave my depression an angry edge, so I was given Risperdal. That one was the worst. I felt like I was swimming underwater; my thoughts and movements were sluggish and my head was in a fog. I had to quit the school band because I couldn’t keep up. I gained at least 10 pounds.
The medications had no noticeable effect on my depression. What I really needed was someone to help me understand and cope with change and the other difficulties that come with AS, but I was given very little therapy. What ultimately helped me was time and my parents’ understanding. They found out that my psychiatrist was getting kickbacks for prescribing certain medications and they saw the hell I was going through, and they agreed to let me stop taking them. It was one of the best things they ever did for me.
That being said, I realize that for some people medication can be life-altering. For me though, a good diet, exercise, and someone to talk to are what I really need.
I’m 46, Autistic, and I take a lot of medications.
For type 1 diabetes, I inject insulin. Like many with both type 1 and autism, I also have celiac but I don’t take anything for that, just don’t eat gluten.
For gastroparesis, I used to take Compazine but I had a bad reaction to it that left me wandering in the streets, belligerent, and picked up by the cops. I nearly died because they treated me as a mental patient rather than a bad medication reaction patient and I wasn’t able to speak and had no I.D. so I was a Jane Doe in the observation ward until I went into DKA from lack of insulin and when they moved me to ICU, a nurse recognized me from a previous visit. So now I can’t take Compazine which is bad because there aren’t any other meds that I can take. Domperidone would be great but the FDA won’t approve it so Medicaid won’t pay for it.
For anxiety, I take caffeine. My body has a paradoxical reaction to caffeine – it calms me, slows my heart rate, lowers my blood pressure, and puts me to sleep. This is good since I can’t take melatonin – it makes me psychotically depressed. What I would prefer to take for anxiety is medical marijuana. I used to smoke 20 years ago and the effects were nearly miraculous. I really miss it. But I don’t have that kind of money and don’t want to go to jail. I don’t think jail would be so great for my anxiety levels.
For PTSD nightmares, I take prazosin. I respond well to it.
That’s pretty much it. I supplement with massive doses of Vitamin D because my blood tests show I need it. My body just throws that stuff out so I have to overload with it. The same with B12, of which I also take massive doses and get regular blood tests to keep an eye on levels.
Because of the gastroparesis, all my meds have to be in liquid form. So there are a couple of other meds I would consider but they aren’t available in liquid so I can’t.
I do respond atypically to a lot of things so I did have to experiment. Most antidepressants have really bad reactions that send me to the emergency room (EPS) and hormonal birth control makes me seriously ill in an emotional/mental way. The Depo Provera injection nearly ended me.
I have a hard time finding compatible meds but when I do, it’s really worth it because I have a lot of anxiety and depression. I really do wish marijuana weren’t illegal in my state because it is the best remedy I have found for anxiety, depression, agitation, etc. Most of the pharmaceuticals intended to treat those conditions actually make me worse.
We tried 2 medications for my son in hope to calm him down so he could focus better for learning- at least that was our rationale. At the time our son was 8 and was still not communicating with us except to request his favorite edibles. He tried Ritalin and Adderal. There might have been a slight calming effect but he was always sad and crying. We discontinued each after one month.
The thing that has hands-down made the greatest difference in my son’s life is teaching him to communicate through a method called RPM. The side effects of showing us he is smart and sharing his ideas was toilet training himself, increased focus, and fewer meltdowns. Another thing we do is not put him in situations that cause him to have a meltdown anymore because he can tell us about it. For example I don’t force him to sit in loud arenas or the church sanctuary because he tells me it bothers him. I agree with others that there are cases where meds are warranted such as the child who could not even stand taking a bath without them. Also if a person can communicate that it helps, by all means do not deny them.
I guess what I’m saying is pursue communication first at all costs and let medication be on the list after. You may not be able to teach your child communication on your own. For many years I wanted to tear my hair out from so many failed attempts of trying on my own. There are people who are specially gifted in this area and have found ways that work that may not be the traditional ABA/ special ed model. Go to an expert who can show you how to do it, whether it’s at the HALO Clinic in Austin to learn RPM or supported typing in Syracuse.
Personally I have taken a laundry list of meds for depression/anxiety over the last 15 yrs…some work well, some zombie me out, some make me feel nothing, and some make me very agitated…however I am not autistic. However both my sons are and we have had the same wide range of experiences with meds for them also
My younger son is 3 1/2, nonverbal, and is on some vitamin and protein supplements and clonidine, with melatonin on weekends for nap. I was VERY anti med when the neuro suggested medicating him, and actually left said neuro bc he had a list of symptoms with a med for each one. But since E was having so much trouble falling asleep and the clonidine covered two issues then I told them after much thought that I’d give it a try. It works very well for him, although not as well as it did at the beginning for sleep. He takes a much smaller dose in the morning before preschool. The only reason i have continued it is because all of his teachers said from the first day that is helped him immensely…instead of running around the room he was actually participating in circle time etc and has been learning a lot. Next neuro suggested another small dose in afternoon “because stimming and being wound up is uncomfortable to autistic ppl” but i consulted with several autistic friends and the stimming etc doesnt bother me so I didn’t take Dr advice. Funny thing is he actually is teaching himself to self regulate in the afternoons without it. He also has just gotten theratogs as another non med solution.
My older son on the other hand is aspie and meds w him have been a nightmare…hes been on almost every ADHD med there is and none have worked and many made him violent or angry even if they did help him focus in some way. When he took Adderral he actually blacked out and ended up in the floor confused. So for him I’m pretty anti med…or maybe try something non stimulant, but i am non custodial parent of him so I don’t make those decisions. Maybe in a few years when he graduates I’ll help him explore other options if he is still having functioning and anger problems. Trying to work with him now on non med self regulation techniques but I don’t have him enough to really help much.
anyway kinda a hard topic to not “write a book” about but thank you Ariane for bringing this up and thank you to everyone commenting so far for having a logical respectful conversations about it 🙂
i am not against medication but i believe, on a growing body and brain especially, it should only ever be the last of all possible options. i was very frustrated when my paediatrician proposed medication on the get go, right after the diagnosis of my son. we changed a lot of things in school, at home, not all big things and also – importantly – adjusted our expectations and chose our battles. the improvement in terms of anxiety, focus, learning ability, sleep quality and general ‘mood’ was absolutely stunning.
my son takes incredibly long to fall asleep and i am well aware this is where the melatonin could do wonders. i am not going that way because i have found ways to make sure he gets enough rest and wind down time and he does – luckily – sleep like a log through the night. but i urge any parent who opts for medication – which is their individual choice and i am not criticizing that at all! – to do so with extreme caution. do it always according to the recommendations of a doctor, under supervision, follow up on dosage, adjust where necessary and take the risk(it’s not really a risk if done in consultation with the doctor, maybe the chance then) of ‘drug free’ phases to control if the necessity for the drug still exists. this includes over the counter medication. melatonin is a hormone type drug. i know it is now commonly used for children, especially for children on the autism spectrum, but there are NO longterm studies, be well aware of that, and it is initially only recommended for temporary use. this goes the same for any type of neurological drug, re anxiety, childhood depression, related to autism or not. again: i am not against it, but give your children a chance to mature and apply other therapy efforts as well.
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I think I remember you had Emma on oxytocin hormone therapy some time back? If I recall, you were very happy with the results. What became of that?
Ah yes, I guess I should thank you for the reminder… except that it was during those years (I would just as soon forget…) when we were trying everything and anything in our attempts to “cure”. But you are absolutely correct, Roger, we did try oxytocin for about six weeks. Richard wrote a post or two about it, as did I. (Those are posts I deleted awhile back) It was one of the last really regrettable things we did prior to finding blogs written by Autistics, which was when everything changed for us. I do NOT recommend anyone using Oxytocin on their child. I have since found a number of troubling articles about it. This is but one – http://www.examiner.com/article/child-trafficking-victims-given-sexual-hormone-for-prostitution-india
I am an autistic adult and I take medication. I was first put on medication at age 12 for depression, my parents took me off the medication as soon as possible. I appreciated their concern and not wanting me to spend my youth medicated, but the meds helped me sleep. I’ve spent most of my adult life on and off antidepressants, not understanding what was going on in my head.
Through this long journey, I have learned exactly how the medications I now take help me–OCD keeps me up at night, so an OCD medication than dulls the compulsions and obsessions helps me to fall asleep. Well rested, I function better. The whole rest of my life requires a balancing act that no medication could provide.
My son, who has autism, Tourette’s, and OCD does not currently take regular medication. We have a very mild anti-anxiety/anti-obsessive medication that he takes upon occasion for his quality of life. Considering how disruptive OCD can be, one day he might choose meds. The key is to take a dose to give control over symptoms without wiping out the uniqueness of your brain. This makes medication a very individual choice.
Both my kids are on meds. One has an autism/bi-polar combined dx and without his meds he is suicidal. He needs it. The other is also an autistic person and she herself is very clear to me that she needs anti anxiety meds, so we do them. (We took her off them and she asked us to put them back, so, we did) I want it to be their own choices as they grow older and will support them in making those choices. It has been really important for both of them in quality of life and I think they would both tell you so if you asked them and they felt able to respond… I hope so.
I commented on the post after this pro-meds but I also feel the need to point out after reading this post that I also have atypical reaction to lots of meds. I could only take the time released adderal because of the mood swings that happened when the med wore off the other type had really bad side effects (including times when I couldn’t will myself to get out of bed). Similarly vyvanse had weird effects on me (I didn’t sleep well, I didn’t eat at all). Ambien at one point given to me for my issues with sleeping caused me to become extremely manic and unable to sit still much less sleep. I extremely dislike pain meds. I’ll take exedrine and aspirin for pain but I hate prescription pain meds. People often take this to mean I’m not in pain but actually I have a high pain tolerance and the prescription meds tamper with this making the pain go away for a short period but as soon as the meds start to wear off (which is fairly quickly for me – quicker than they are suppose to) I can feel pain even worse than before. So, I prefer to forgo the prescription meds and just take aspirin or ibuprofin – only taking the stronger meds to help me sleep (I did this for several major surgeries….and one severe ear infection that I let go so long before seeing the doctor for that the doctor was confused by how I was no incapacitated with pain, my ear was swollen shut. I told him I had taken aspirin and that I had a high pain tolerance (I did not know I had Aspergers yet at the time or I’d of mentioned that too). He gave me an odd look as if he thought I were lying.